This is my description of wha I felt while going through all the treatments and living my life with this awful disease
Friday, July 12, 2013
More new beginnings!
So I am officially graduated from college and on the lookout for a job in the social work field. I couldn't be happier or more proud of myself! Its hard going back to school, working full time and managing your school work and studying too, but I hung in and I did it! I also want to thank my family for supporting me throughout this whole journey and thanks to Melissa B., Lindsay P., and all my other classmates for making me feel so comfortable and helping me succeed!! I have made some great friends!!!
I also have found out that I have hypothyroidism and am currently on medication to sort that out! I was getting so tired and falling asleep at work and everything... then I received a phone call from my doctor saying that I needed to go on thyroid medication. I am finally starting to feel more energized and healthy. Its a great feeling!!!!
Tuesday, June 4, 2013
Update... again!
Good morning everyone,
So I know its been a while since I have wrote on my blog, but I have been crazy busy. In September I FINALLY went back to finish my Social Work Diploma. I am now on my last class and should, no I WILL be graduating in June (YAY!!!!!). Like I said in my last post, it is a lot harder to go back to school as an adult than it was to go to college right after high school! But thankfully I have meet some really great people who have helped make this journey a little easier! Especially Melissa! Thank you guys!
So on top of school I have been working full time as well, and that's going good... just not what I want to do for the rest of my life! The oilfield sucks you in with all the money but drains you because everything needs to be done yesterday and working 7am-4pm doesn't seem long but its really starting to wear on me.
I also had recently went to Edmonton to visit Dr Chik, my endo. She thinks I have full blown Nelsons Syndrome. The inside of my gums are turning dark, and the inside of my lips are spotted with dark spots. I have a little bit of a tan all the time (which is one of the best symptoms) and little dark spots on my hands. None of "my spots" are super dark so it doesn't look unusual, its just not the way it was before.
I also am having to do pre and post cortef blood work every 3-6 months. This means I go to the lab and get my blood work done prior to taking my pills and then come back 3 hours later to get it done again. I had this blood work done in Edmonton and just found out yesterday that I need to go on thyroid medication. This explains why I have been exhausted for a long time, even if I had 8-10 hours of sleep I was exhausted, and I mean EXHAUSTED! I am late for work almost everyday and fall asleep as soon as I hit the pillow (sometimes at 6pm lol). Hopefully once I start taking these pills things will get better and I won`t be so tired all the time!
Next.... I have lost 25 pounds from January-May. I feel better and still have more to lose, but I am proud of myself!I also went to my first horse show of this year and it was SO much fun! We did pretty well and when our next show rolls around we will be prepared!
This was me in 2007
This is me this year (2013)
I feel much better now that I have lost close to 60lbs over the last 8 years (I would gain, I would lose, then gain again) it has been a long process but I am getting closer to my goal!
This is me this year (2013)
I feel much better now that I have lost close to 60lbs over the last 8 years (I would gain, I would lose, then gain again) it has been a long process but I am getting closer to my goal!
Friday, October 5, 2012
Better days....
Ok so when I wrote the last post I was having a horrible day.... obviously! The fact is that I am allowed to have bad days... I do apologize for ranting on my blog!
I went to my endocrine last week and found out that my ACTH levels are still high (which didn't surprise me). She also said that she thought the radiation would have done something by now. Its disappointing to know you have gone through a treatment (like radiation) and it didn't work as well as your doctor thought it would. But moving on... so she decided to change my dosage of cortef to 15m in the morning, 5mg at lunch and 5mg at supper. This is supposed to be helping me to sleep better. We will see!
I wanted to add too for those of you on Pinterest there is a great pinner who posts lots of great information and pictures on there! If you search "Cushings Help" you will be able to find it!
Not to much else to report other than I am now working full time AND going to college part time. I am going to finish my Social Work Diploma and then get my Criminology diploma. It is a bit stressful because I have been out of school for so long but I am hanging in there!
Friday, August 3, 2012
The never ending story
This is the song that never ends, it just goes on and on my friends.......
My last appointment with my endocrine was on March 9 2012. The last few appointments I have had with her she told me that she was concerned about my ACTH levels because they continue to be ridiculously high. I had more blood work done and again my levels were higher than she would like.
She told me about a new medication at my appointment in September. It is called Dostinex. Dostinex is primarily used to inhibit the production of prolactin cells. Which is not my problem, but in recent studies it has been very effective in doing the same for ACTH. I told her in September that I wanted to hold off on using this new drug because of its side effects. The side effects include: nausea, constipation, dry mouth, frequent gastric irritation, vomiting, and dyspepsia. sleep disturbances (including insomnia), vertigo, depression, hallucinations,hypotension, and heart palpatations to name a few.
Well at this particular appointment on March 9 2012 I was told that it was my best option to start this drug and I probably wouldn't experience any of the side effects, and if I did they would be slight. Well let me tell you I have been taking this medication for a few months and I have been sick (vomiting), most days I feel like I am in a boat (and I am a flat lander, I don't do well in boats), and I just feel YUCKY! I really hope this medication is working cuz it is BRUTAL!
It got me thinking, for the last 7 years I have been poked, prodded, stared at, cut open, blasted with radiation, cut open some more, I have a pharmacy in my purse, and I still don't see an end in sight. I try and stay positive, but I am starting to break. The hardest part is that I have lost 30lbs TWICE now... and gained it ALL back. I can't keep the weight off and trust me I am trying. I hate being stared at in restaurants when I have to take my pills, I hate having to fly to doctors appointments by myself. I HATE THIS!!!!!!!!! I hate feeling FAT, I HATE having to take pills EVERYDAY! I hate how I have to always think about what would happen if I got in an accident, I ABSOLUTELY HATE HOW NO ONE UNDERSTANDS WHAT I AM GOING THROUGH OR HOW I FEEL....
I HATE IT!
Saturday, April 28, 2012
One more surgery...
I was in Edmonton for a follow up last spring. I had been getting "heartburn" for a couple weeks so I really was trying to watch what I ate. Sherry came and picked me up from the airport and I hadn't eaten yet.... we stopped at Tim Hortons and I grabbed a turkey sandwich. We went back to Sherrys house, I ate my sandwich and we sat and visited. I started to feel my "heartburn" coming on again so I asked Sherry if she had any tums or anything. I took some tums and thought it would go away.... nope, I was wrong. It got really bad. I told Sherry that I had to go to bed because the pain was so bad I couldn't sit and talk anymore. I went to bed but couldn't sleep because the pain got worse and worse. Around 1:00am the pain got so bad that it made me throw up. I felt better after that and fell asleep.
The next morning I felt fantastic. When I got to my doctors appointment I told my doctor about my "heartburn" and she told me that I should have a scope done to make sure it wasn't acid reflux or something. Everything else seemed to be unchanged, slightly high ACTH levels, but no significant change.
I left the hospital and went to the mall. I had about 5 hours till I had to leave for the airport. When I got to the mall I was hungry, I hadn't eaten since the night before. I got some food in the food court and sat down. As soon as I sat down I felt my "heartburn" coming on. It was different this time though...it came on REALLY fast. I hardly ate anything and the pain was so bad I couldn't take it. I went to the pharmacy in the mall and got some heartburn medication. The pharmacist told me it was the best stuff and my heartburn should go away within 20 minutes. Well it was a LONG 20 minutes and the "heartburn" didn't go away, it got worse... MUCH worse. I was getting really hot and it hurt to sit, it hurt to stand, and it hurt to breathe. I was scared, I was in Edmonton by myself and didn't know why I was in so much pain. I called my mom (like I do every time I don't feel good), and she told me to go back to the hospital. Mom told me that it sounded like the pain she had right before she had her gall bladder our. I am pretty sure I screamed at her and told her it was just heartburn. I didn't know where to go at the hospital so I ended up going back to the pharmacy and asked him if there was anything else I could take. I described my pain and told the pharmacist where the pain was and that it was excruciating. He said that it did sound like a gall bladder attack. I asked him if there was anything I could take without a prescription, he said no (literally all he said was "no"). He gave me some extra strength advil.
I went back to sit in the food court. Well I only sat for a couple minutes, then I layed on the bench. I thought I was going to throw up again so I went to the bathroom. Nope, just in pain. By this time the pain was so bad that I was burning up, sweating, and it was just getting worse. I was scared because I was by myself. Please don't judge me on what I am about to say but I was in EXTREME pain. I ended up laying on the floor in the bathroom of the mall.... yup I know gross. But I couldn't even stand I was in so much pain.
Finally I called my doctor at the hospital and she told me to go to the Emergency. She said she would send a doctor to come see me because she knew I had to be at the airport soon. So I went and waited for an hour and no one came. The pain seemed to be getting less and less. So I took a taxi to the airport.
By this time my mom and dad had driven to Grande Prairie to meet me and drive me home. I was made, after all I am 25 and am an adult. I did not need to be babysat! Well 15 minutes into our drive home BAM! I was keeled over in my passenger seat (my mom was driving). The pain seemed to be coming on faster and faster each time. It was excruciating. My mom asked me if I wanted her to turn around and take me to the hospital, but I was worried that I would have to stay and I didn't want to be in the hospital in Grande Prairie, so she continued the drive home.
It took us just about 3 hours to get home. Well we didn't even go home, we went straight to the hospital. The doctors told me that it sounded like I had "peptic ulcer disorder". They gave me a shot of tortol for the pain and gave me prescriptions for peptic ulcers. The next day I went and got blood work done as per the doctor from the emergency room.
I continued to take the medication for the "peptic ulcer" that I had. I felt a really good, and no more pain! About a week later I was at work when the doctors office called and told me that my doctor wanted to see me. It didn't sound urgent so I told her that I would come in the next day. The next day I left on my lunch break and went to the doctors office. I did not even get my coat off and my doctor came rushing in and said "You need surgery!" I says pardon?
Turns out I had extreme pancreatitis. Oh and gall stones. I love how it took them over a week to call me to tell me that. I asked my doctor when I needed to have the surgery, she said "They are waiting for you at the hospital". Huh... But I can't I am on my lunch break.... yup that was my response. She said that I needed to go over to emerg because they didn't have any beds available, and that they were waiting for me. ok....?
So I got back in my vehicle and I just sat there in shock. Not the news I was expecting. I called my boss and told him that I probably wasn't coming back. He said "What do you mean your not coming back?" I said "I think I have to have surgery..." He then said "What do you mean you THINK you have to have surgery" I guess I was just expecting to get to the hospital and them tell me that there was a mistake, I mean I felt good.
So I went to the hospital expecting them to tell me that everything was fine. Nope. They gave me one of those AWESOME hospital gowns (yes I am being sarcastic) and started hooking me up to IVs. So I kinda panicked. Thats when I thought I had better call my mom. When she answered her phone she asked how I was doing (knowing that I had pains the week before). I told her that I was at the hospital and she asked me if the pain was back. I said "No, but I think I have to have surgery." She was shocked.
My dad ended up coming to the hospital and my mom went home to get me some jammies, books, slippers, a bath robe and whatever else she thought I would need. (Can you tell that we have done the surgery thing before?)
They decided to do a ultra-sound before sending me into surgery. The lady was horrible and grouchy. Then the doctor came to talk to me. It turns out that the gall stones weren't as bad as they were when they took the bood tests. Go figure, it was over a WEEK ago! They decided to not do the surgery but send me back to Grande Prairie for a scope.
So the next day I went to Grande Prairie with my mom. I was under the impression that they were going to put me to sleep to do the scope.... NOPE! I started freaking out, I couldn't believe I was going to be awake! But the nurse told me that they were going to give me some medication to make me not remember anything and it wouldn't hurt. Once they got me into the room they had me on my stomach and they cranked my neck to the right. I watched the nurse inject something into my IV, then another.... I started getting foggy. Then she started putting a third and I don't remember anything after that.
When I woke up I was in the "recovery" room. Mom came in and she told me that they sliced my bile duct to let the stones drain. But they noticed that my gall bladder was very enlarged. They were sending me BACK to Fort St John to have my gall bladder removed. Mom also told me that she could hear me snoring out in the lobby! Haha must have been a good sleep! I was very groggy and don't remember much from the rest of that day (because of the medication they gave me). Mom told me that as we were leaving the hospital the FSJ Hospital called to arrange my surgery. She tried to take my phone from me (knowing that I wouldn't remember anything) but I wouldn't let her. She was right, I didn't remember anything.
I called the hospital the next day (Friday). I went to see them that day for my pre surgery prep. The following Monday I had my gall bladder removed. I had four tiny cuts and I was sore for a couple weeks, but I haven't had ANY pain. I was later told that getting gall stones can be heriditary. My Grandpa and my mom both had their gall bladders removed.
Hopefully this will be my LAST surgery. I now have 13 scars on my stomach from surgeries.... I am starting to feel like Frankenstein.
Wednesday, March 14, 2012
Life goes on.....
Sorry guys, I have been busy!!!!
I haven't wrote on here for about a year or so.... lots has happened... I broke my foot and was in a cast for 9 weeks. They only took it off so I could be a bridemaid in my friends wedding and not ruin her wedding pictures. The wedding was beautiful, and I walked most of the day on my foot.... I paid for it later. I had to use my crutches for another 2 weeks and the doctors tried to recast my foot! I was able to talk them out of it but I had to do months of physio. My specialist said that because of my illness my bones are more brittle and I need to be more careful.... haha guess its not a good time to tell her how many times I have been bucked off or fallen off my horse! I have had some sad things happen in my life to. A young man that I used to babysit and was a family friend was killed in a horrible head on collision. Unfortunately I knew the other person involved in the accident too and she too died. It was a rough week.
I am still doing agility in the summer with my dog Harley, and we both enjoy it very much. I am still riding/showing my horse but now I am riding two horses. I currently have a fulltime job (9hrs/day 5 days a week) and a part time job. I love both my jobs but only a fool would have 2 jobs for fun! I am saving money because my boyfriend and I are going to Denmark in August. I am so excited!!! I will also be going back to school in September to finish my Social Work diploma. Its been a long time coming, 7 years to be exact.
I recently went back to my specialist for another check up. I am still going to Edmonton every 6 months to the U of A hospital, and once a year to the cross-cancer center for check ups. For the most part things are going good. My ACTH is still high which concerns my endocrine. I have started showing symptoms of Nelsons Syndrome. My skin is darkening (a bit not a lot), I have a few dark spots between my fingers, and on my gums that are more noticable. I am still struggling with weight loss. I had lost another 20 pounds but unfortunately I gained most of it back. I will continue to fight this because I KNOW I can do it!!!!! My endocrine has decided to put me on Dostinex to try and lower my ACTH. I haven't started it but I have been warned that it has some gross side effects.
Life for me has been great. I started dating a wonderful man, we have known each other for years but only about 4 months ago began dating. He is very supportive, understanding and just amazing!
I have SLOWLY began to learn to live with this illness. I try and take better care of my body, more fruits and veggies (which is hard for me because I LOVE carbs!). I realize now that I will never be the person I was before I was diagnosed with this illness, but I think I am better for that! I am trying to be more diligent about taking my pills at the same time every day, which I am not gonna lie doesn't happen all the time, but its getting better. I started seeing a lady who does Shakra balancing, Cord cutting, etc. She has been so helpful. I realize now that even though most of my grandparents and Kyle have passed away, they are still with me. When I struggle to keep going I ask them for the strength to keep going and I feel and extra push. I know they are watching over me keeping me safe. I got a tattoo last March. It is a dragonfly (which represents inner courage, strenth and in some cultures family) and around it I have flowers and they are the birthstone colours of my loved ones that have passed. That way when I feel like I can't fight anymore I just have to look down and I know they are there to help me!
My nephew is also growing like a weed.... he is in grade 1 this year and he is too smart for his own good! I love him so much!
All in all I am still fighting this disease but I have wonderful family, friends, and animals to help me through. I am up for a fight now!!!! Lets kick some Cushings Disease/Addisons Disease A$$!!!!!
I will keep writing and let you all know how the Dostinex works for me. I still cannot express the gratitude for all of you who are reading this blog.... THANK YOU!
I haven't wrote on here for about a year or so.... lots has happened... I broke my foot and was in a cast for 9 weeks. They only took it off so I could be a bridemaid in my friends wedding and not ruin her wedding pictures. The wedding was beautiful, and I walked most of the day on my foot.... I paid for it later. I had to use my crutches for another 2 weeks and the doctors tried to recast my foot! I was able to talk them out of it but I had to do months of physio. My specialist said that because of my illness my bones are more brittle and I need to be more careful.... haha guess its not a good time to tell her how many times I have been bucked off or fallen off my horse! I have had some sad things happen in my life to. A young man that I used to babysit and was a family friend was killed in a horrible head on collision. Unfortunately I knew the other person involved in the accident too and she too died. It was a rough week.
I am still doing agility in the summer with my dog Harley, and we both enjoy it very much. I am still riding/showing my horse but now I am riding two horses. I currently have a fulltime job (9hrs/day 5 days a week) and a part time job. I love both my jobs but only a fool would have 2 jobs for fun! I am saving money because my boyfriend and I are going to Denmark in August. I am so excited!!! I will also be going back to school in September to finish my Social Work diploma. Its been a long time coming, 7 years to be exact.
I recently went back to my specialist for another check up. I am still going to Edmonton every 6 months to the U of A hospital, and once a year to the cross-cancer center for check ups. For the most part things are going good. My ACTH is still high which concerns my endocrine. I have started showing symptoms of Nelsons Syndrome. My skin is darkening (a bit not a lot), I have a few dark spots between my fingers, and on my gums that are more noticable. I am still struggling with weight loss. I had lost another 20 pounds but unfortunately I gained most of it back. I will continue to fight this because I KNOW I can do it!!!!! My endocrine has decided to put me on Dostinex to try and lower my ACTH. I haven't started it but I have been warned that it has some gross side effects.
Life for me has been great. I started dating a wonderful man, we have known each other for years but only about 4 months ago began dating. He is very supportive, understanding and just amazing!
I have SLOWLY began to learn to live with this illness. I try and take better care of my body, more fruits and veggies (which is hard for me because I LOVE carbs!). I realize now that I will never be the person I was before I was diagnosed with this illness, but I think I am better for that! I am trying to be more diligent about taking my pills at the same time every day, which I am not gonna lie doesn't happen all the time, but its getting better. I started seeing a lady who does Shakra balancing, Cord cutting, etc. She has been so helpful. I realize now that even though most of my grandparents and Kyle have passed away, they are still with me. When I struggle to keep going I ask them for the strength to keep going and I feel and extra push. I know they are watching over me keeping me safe. I got a tattoo last March. It is a dragonfly (which represents inner courage, strenth and in some cultures family) and around it I have flowers and they are the birthstone colours of my loved ones that have passed. That way when I feel like I can't fight anymore I just have to look down and I know they are there to help me!
My nephew is also growing like a weed.... he is in grade 1 this year and he is too smart for his own good! I love him so much!
All in all I am still fighting this disease but I have wonderful family, friends, and animals to help me through. I am up for a fight now!!!! Lets kick some Cushings Disease/Addisons Disease A$$!!!!!
I will keep writing and let you all know how the Dostinex works for me. I still cannot express the gratitude for all of you who are reading this blog.... THANK YOU!
Friday, May 6, 2011
More Issues
So things have been going relatively good. I still get tired a lot... especially when I forget to take a pill or take them late. I only have to go to Edmonton for check ups every 6 months so thats great. There have been a few issues come up in the last year such as:
Last summer on the night of my youngest sisters grad I had gone out to go dancing with my sister Jessi. I wore some super cute wedges that my mom had bought for me. I danced all night in them with no issues. As we were leaving I twisted my ankle and fell in front of about 20 people (SOOOOOO embbarrassing!!!!!!) I was so embarssed that I walked about a block on my sore foot to catch our cab. My sister asked me if I was ok and I told her that I would be fine and she thought that i should maybe go to the hospital to get it checked out. I said that I just needed to "sleep it off". When the cab pulled up to my house I had to have Jessi help me inside and I literally CRAWLED upstairs to my bed.
The next morning I woke up and went to get out of bed and as soon as I tried to take a step I hit the floor..... I looked at my foot and it was very swollen. Jessi had heard me fall and asked if I was ok. I told her that I thought it was time to go to the hospital. She helped me to my car and drove me to the hospital. I hopped inside and they took me to a bed right away (having cushings/addisons they don't mess around and I usually get in right away) The doctor came in and examined my foot and told me that I would need to have an x-ray done. I went for the x-ray. The doctor came in and he said that he had some bad news. I broke the fifth metatarsal in my foot and it would need to be casted.
At this point I was devastated. I had been playing ball twice a week, doing agility once a week with my dog Harley and was looking forward to a summer filled with camping, and I had ruined it.... all because of one pair of shoes. Then I remembered that I was going to be a bridesmaid in my friends wedding and started to panic. The doctor told me that I would only have to be in a cast for about 4 weeks, and Shannons wedding wasn't for about 10 weeks. As he was casting me he kept trying to push my foot up so that my tendons wouldn't shrink.... OMG!!! That hurt unbelievably bad. Once I was casted the doctor gave me some crutches (the foot I broke was on the same leg I had broke when I was seven and it sucked just as much now as it did back then!!) I was told that I would have to make an appointment with my doctor in a few days to make sure the cast was still fitting right.
A few days later I went to see Dr Lupu. She told me that there was no way I would have my cast off in 4 weeks. I had a "Jones Fracture" (comman in dancers) and that it would be more like 6 weeks. Well it turned out that it was more like 9 weeks... YUCK!
Last summer on the night of my youngest sisters grad I had gone out to go dancing with my sister Jessi. I wore some super cute wedges that my mom had bought for me. I danced all night in them with no issues. As we were leaving I twisted my ankle and fell in front of about 20 people (SOOOOOO embbarrassing!!!!!!) I was so embarssed that I walked about a block on my sore foot to catch our cab. My sister asked me if I was ok and I told her that I would be fine and she thought that i should maybe go to the hospital to get it checked out. I said that I just needed to "sleep it off". When the cab pulled up to my house I had to have Jessi help me inside and I literally CRAWLED upstairs to my bed.
The next morning I woke up and went to get out of bed and as soon as I tried to take a step I hit the floor..... I looked at my foot and it was very swollen. Jessi had heard me fall and asked if I was ok. I told her that I thought it was time to go to the hospital. She helped me to my car and drove me to the hospital. I hopped inside and they took me to a bed right away (having cushings/addisons they don't mess around and I usually get in right away) The doctor came in and examined my foot and told me that I would need to have an x-ray done. I went for the x-ray. The doctor came in and he said that he had some bad news. I broke the fifth metatarsal in my foot and it would need to be casted.
At this point I was devastated. I had been playing ball twice a week, doing agility once a week with my dog Harley and was looking forward to a summer filled with camping, and I had ruined it.... all because of one pair of shoes. Then I remembered that I was going to be a bridesmaid in my friends wedding and started to panic. The doctor told me that I would only have to be in a cast for about 4 weeks, and Shannons wedding wasn't for about 10 weeks. As he was casting me he kept trying to push my foot up so that my tendons wouldn't shrink.... OMG!!! That hurt unbelievably bad. Once I was casted the doctor gave me some crutches (the foot I broke was on the same leg I had broke when I was seven and it sucked just as much now as it did back then!!) I was told that I would have to make an appointment with my doctor in a few days to make sure the cast was still fitting right.
A few days later I went to see Dr Lupu. She told me that there was no way I would have my cast off in 4 weeks. I had a "Jones Fracture" (comman in dancers) and that it would be more like 6 weeks. Well it turned out that it was more like 9 weeks... YUCK!
Friday, January 7, 2011
SORRY!!!!
Ok so I know it has been a REALLY long time since my last post and I want to appologize! I have been busy working (I work 6 days a week). I wanted to thank everyone near and far for your comments and love. It makes me feel extremely happy when I hear about how my blog has helped someone learn more about this disease. I have gotten many comments from people going through this (whether directly or a family member or friend) and I am so happy to hear that reading my blog can provide some comfort or information. I am going to continue writing and I promise it won't be long til the next posting! I have more to share!!
**MUCH LOVE!**
**MUCH LOVE!**
Wednesday, July 28, 2010
Life after Surgery
After I got home and had a chance to rest, things went pretty smoothly. I moved out of my parents house for the third time about 2 weeks after I got home from the hospital. My parents didn't want me to move out so soon after my surgery. They were worried that I would have another adrenal attack and no one would be there to help me. I just felt that it was something I had to do. I wanted to get back some of the independance that I have lost back. I assured them that I told my roommate all about my disease and that if something wasn't right to call an ambulance. My mom relented and got a bunch of people to move my things because I couldn't pack any of the boxes. I was excited and nervous... deep down I was scared... What if I had another attack and I could get help? But I WANTED to feel like an adult, not akid who lives at their parents. I still seen my mom everyday, she checked on me ALOT, which I loved. It was nice to know that I didn't have to be scared.
I started feeling better and about a month after my surgery I started getting back to normal. My incisions still were sore but I was careful and started doing more "normal" things such as brushing my horse, cleaning stalls, ect. I still couldn't pack water pails and it took me almost half an hour to clean my stall (normally takes 10-15 minutes) but I was determined to do it. My mom was always giving me crap because she said I needed to rest and heal properly.
There were times I wish I had of listened! For example I got it in my head one day while I was brushing Luci in the arena and walking her around that I could get on her... so I had my mom to help me up on her.... after a bit of begging and alot of convincing.....well I didn't quite make it up nefore I got a BRUTAL pain in my stomach... my mom let me down and I was sore for DAYS.... to the point that I could hardly walk! I decided that I would wait a bit longer before I rode her.... all my mom said was "I told you so!"
I started to realize that I had to be patient. I couldn't do the things I used to, I was tired ALOT. I think that was due to the fact that I no longer have adrenal glands, having my body get use to not having them, and also having my body get used to the new medications that I have to take. I had to learn when to rest... if I didn't feel good or was tired it was a bad idea to just push through it. I had to wait until my body was used to this before I could be the tough guy again.
It took MONTHS for me to start feeling better. I was depressed because I couldn't do anything... I felt like I was 80, I could barely walk up my stairs without taking a break, and this feeling lasted for about 6 months. I also had to be very consistient with taking my pills. If I missed one or was late taking one I felt HORRIBLE for a couple days. It isn't a feeling like having a cold or the flu, it is just complete and udder exhaustion, headaches, and well just not a good feeling.
My life has definately changed even more since my last surgery. I have to be more careful. I keep some pills at my house, in my car and a few at work so if I forget to take them I have extras. I can't be as careless as I once was, if I get hurt my body can't make cortisol to deal with the pain and if I don't compensate with pills my body will go into adrenal shock. I also have to carry a needle in my car, just in case I get in an accident or get hurt. Luckily I haven't had to use it yet, but I have to tak it everywhere.... although I must admit that I forget sometimes. My close friends and family have to know when/how to use the needle. It is comforting knowing that my family and friends know what to do in an emergency situation.
My life has changed alot since I had my adrenalectomy both for the good and the bad. The bad changes include haveing to take medications 3 times a day everyday, not feeling good when I am late taking my pills, I have to be super cautious when playing sports, driving, camping etc. so that I don't get hurt. I still get tired alot, and there are days I have absolutely NO energy, but there are days that I feel GREAT, I have lost 20 pounds (which is the most weight that I have lost since I got diagnosed), and I have learned not to take like for granted. I am starting to learn how to embrace life, and live it to the fullest. I am starting to feel healthy again. I decided to start playing baseball again, I have started going to the gym, and I have started to feel comfortable with the way I look. I started going out with friends, and I am starting to realize what I want to do with the rest of my life.
So far things are going great.
I started feeling better and about a month after my surgery I started getting back to normal. My incisions still were sore but I was careful and started doing more "normal" things such as brushing my horse, cleaning stalls, ect. I still couldn't pack water pails and it took me almost half an hour to clean my stall (normally takes 10-15 minutes) but I was determined to do it. My mom was always giving me crap because she said I needed to rest and heal properly.
There were times I wish I had of listened! For example I got it in my head one day while I was brushing Luci in the arena and walking her around that I could get on her... so I had my mom to help me up on her.... after a bit of begging and alot of convincing.....well I didn't quite make it up nefore I got a BRUTAL pain in my stomach... my mom let me down and I was sore for DAYS.... to the point that I could hardly walk! I decided that I would wait a bit longer before I rode her.... all my mom said was "I told you so!"
I started to realize that I had to be patient. I couldn't do the things I used to, I was tired ALOT. I think that was due to the fact that I no longer have adrenal glands, having my body get use to not having them, and also having my body get used to the new medications that I have to take. I had to learn when to rest... if I didn't feel good or was tired it was a bad idea to just push through it. I had to wait until my body was used to this before I could be the tough guy again.
It took MONTHS for me to start feeling better. I was depressed because I couldn't do anything... I felt like I was 80, I could barely walk up my stairs without taking a break, and this feeling lasted for about 6 months. I also had to be very consistient with taking my pills. If I missed one or was late taking one I felt HORRIBLE for a couple days. It isn't a feeling like having a cold or the flu, it is just complete and udder exhaustion, headaches, and well just not a good feeling.
My life has definately changed even more since my last surgery. I have to be more careful. I keep some pills at my house, in my car and a few at work so if I forget to take them I have extras. I can't be as careless as I once was, if I get hurt my body can't make cortisol to deal with the pain and if I don't compensate with pills my body will go into adrenal shock. I also have to carry a needle in my car, just in case I get in an accident or get hurt. Luckily I haven't had to use it yet, but I have to tak it everywhere.... although I must admit that I forget sometimes. My close friends and family have to know when/how to use the needle. It is comforting knowing that my family and friends know what to do in an emergency situation.
My life has changed alot since I had my adrenalectomy both for the good and the bad. The bad changes include haveing to take medications 3 times a day everyday, not feeling good when I am late taking my pills, I have to be super cautious when playing sports, driving, camping etc. so that I don't get hurt. I still get tired alot, and there are days I have absolutely NO energy, but there are days that I feel GREAT, I have lost 20 pounds (which is the most weight that I have lost since I got diagnosed), and I have learned not to take like for granted. I am starting to learn how to embrace life, and live it to the fullest. I am starting to feel healthy again. I decided to start playing baseball again, I have started going to the gym, and I have started to feel comfortable with the way I look. I started going out with friends, and I am starting to realize what I want to do with the rest of my life.
So far things are going great.
Monday, July 12, 2010
In a Hospital AGAIN
So when I was admitted they said I would probably only have to spend the night, the doctors just wanted to run some tests. I was still on the liquid diet so it really sucked. But my mom and dad, as well as my sisters Leanne and Jaimie came to visit with me. I was hardly left by myself. It is nice knowing that I have such a supportive family. They may not always understand what is going on but they are ALWAYS there for me. Hell, I don't even know whats happening!
It was funny because I was convinced that regardless of my just getting out of the hospital 2 days before, I was still going camping on with my friends for May Long, and my mom absolutely refused. We argued about it, but apparently I was going to be spending the weekend in the hospital. I was kind of bummed about it, until it snowed! I also still had trouble breathing so even though I wanted to go camping I knew deep down (even before I went to the hospital) that it was a really bad idea.
Dr Lupu (my family doctor) came in that evening. She was concerned about my breathing. She said she was leaving for holidays the next morning but she would leave me a prescription with the nurses and I was to grab it before I left the hospital.
The second morning they brought me some tea for breakfast... by this time I thought I was starving. So just before lunch I was sitting in the room with Jaimie and I finally asked how much longer I was on a liquid diet. The nurse went to check with the doctor and came back with great news. Apparently I was allowed to eat solid food and they had just got mixed up with breakfast! Immediately I got my sister to call my mom who brought me Subway!! Never has it tasted so good! That afternoon my Dad Jack and my sister Jessi came to visit me.
I was in the hospital for a total of days and 3 nights. I was in my own room for the first 2 nights which was GREAT! But on the 3rd night I was moved into a room with 3 other ladies. Let me tell you... it was the most horrible night ever... the nurses couldn't tell me anything other than I was not to take ANYTHING from the one lady as she had a contagious disease. SCARY!!! lol but I survived the night and the next morning I was told that I was allowed to go home. They had come to the conclusion that I had an adrenal attack, that had occured because my body was getting used to not having my adrenal glands anymore. So I asked the doctor on call for my prescription that Dr Lupu had left. He said that he didn't see anything there for me but he wrote me a prescription for some pain killers and then I called my Dad and he came and picked me up and I went home.
So glad to sleep in a REAL BED!!!!!
It was funny because I was convinced that regardless of my just getting out of the hospital 2 days before, I was still going camping on with my friends for May Long, and my mom absolutely refused. We argued about it, but apparently I was going to be spending the weekend in the hospital. I was kind of bummed about it, until it snowed! I also still had trouble breathing so even though I wanted to go camping I knew deep down (even before I went to the hospital) that it was a really bad idea.
Dr Lupu (my family doctor) came in that evening. She was concerned about my breathing. She said she was leaving for holidays the next morning but she would leave me a prescription with the nurses and I was to grab it before I left the hospital.
The second morning they brought me some tea for breakfast... by this time I thought I was starving. So just before lunch I was sitting in the room with Jaimie and I finally asked how much longer I was on a liquid diet. The nurse went to check with the doctor and came back with great news. Apparently I was allowed to eat solid food and they had just got mixed up with breakfast! Immediately I got my sister to call my mom who brought me Subway!! Never has it tasted so good! That afternoon my Dad Jack and my sister Jessi came to visit me.
I was in the hospital for a total of days and 3 nights. I was in my own room for the first 2 nights which was GREAT! But on the 3rd night I was moved into a room with 3 other ladies. Let me tell you... it was the most horrible night ever... the nurses couldn't tell me anything other than I was not to take ANYTHING from the one lady as she had a contagious disease. SCARY!!! lol but I survived the night and the next morning I was told that I was allowed to go home. They had come to the conclusion that I had an adrenal attack, that had occured because my body was getting used to not having my adrenal glands anymore. So I asked the doctor on call for my prescription that Dr Lupu had left. He said that he didn't see anything there for me but he wrote me a prescription for some pain killers and then I called my Dad and he came and picked me up and I went home.
So glad to sleep in a REAL BED!!!!!
Tuesday, June 1, 2010
Tuesday, April 13, 2010
What is HAPPENING?!?!?!?!
So mom and I waited for the ambulance to come get me... as we waited the pain became a LITTLE bit less.... but not much. My stomach hurt... it honestly felt like someone was stabbing me.... I wanted to cry. My mom just sat there with me telling me it was going to be OK and rubbing my hand and forehead (she used to rub my forehead when I was a baby an it put me to sleep.... it still helps me to relax!)
The ambulance arrived shortly, thank goodness mom had gone up to my room and got my robe for me, because the one ambulance driver was pretty hot :) They asked me a few questions and loaded me onto the bed and put me in the truck. Mom was going to follow in her truck and bring me some clothes.
The ambulance ride down my driveway was so bumpy and it hurt... every little bump put me inn excruciating pain. So because I have my Dads sense of humor I told the driver that I wouldn't tip him if he kept hitting every bump. We all laughed (but that hurt too!)
When we arrived at the hospital I got wheeled in and the pain was starting to get worse again. Leanne and Jaimie (my sisters for those of you who don't have the pleasure of knowing these two AMAZING girls) showed up to stay with me while my mom gathered some clothes and stuff for me. The nurse came in and shot them a dirty look, like they had no business being there. She asked me what was going on and I told her that I didn't know why I was in so much pain and I explained to her what happened. She told me that "it could be worse because her niece just had open heart surgery, and that is MUCH worse!" I was like OK.... she left the room (not sure where she went but she left and my sisters and I were trying to chat. I remember looking at both my sisters and all I could see was fear and panic in their eyes. They haven't really been around me in the hospital so its hard for them to see me in pain and scared.
The nurse came back shortly and took my blood pressure and pulse. She was being a cow and just rude. I told her that I was in a lot of pain and I really wanted something for the pain. I can't remember her EXACT words but it was something along the lines of suck it up and deal with it. Her niece just had open heart surgery... blah blah blah. Then she left again.
So there I am lying in pain with my sisters who were shocked at this nurses attitude (at that point I didn't even care, I thought I was going to die... it hurt SOOOO bad). when the nurse came back in she asked me again why I was in pain. So I told her once again that I didn't know why, it happened so fast I had no idea what was happening. I told her again that I needed some pain medication, and once again she told me that I needed to suck it up because I didn't just have open heart surgery.I told her I am really sorry for your niece but right now I didn't really care. Well I think that was the breaking point for my sisters. They snapped on her and told her to get a doctor. She ran out in a huff... and I think it was about this time that my mom showed up.
The doctor came in and asked me a bunch of questions. He had looked at my file so he knew I had Cushings Disease, and according to him that made me a high priority. We explained to him that I had just came out of the hospital in Edmonton, and that I had a bilateral adrenalectomty. Pretty much immediately he started me on some pain medication (which was AWESOME!!!!) and got someone in to take some blood tests.
He told me that he wanted to keep me in the hospital for a few days. This was on Thursday... I was supposed to be going CAMPING on Friday. That made me sad, but I am glad this happened when it did and not when I was out in the bush somewhere! They moved me into my own room and put me on a liquid diet, my absolute favourite diet of all time (do you sense the sarcasm?) That meant now solid food, only water, tea and soup broth... NOT EVEN NOODLES!!!!!!!!! I was SOOOO hungry too because I hadn't eaten since supper the night before! :( But I drank my soup broth and drank my tea. YUM!! NOT!!!!!!!!!!!!!
My mom and sisters stayed up at the hospital for a little bit but I really wanted to nap. They gave me kisses and told em they would be back in a little while to check on me. My mom is so great she had already ordered my TV and brought me clothes and Jaimie had brought me a couple magazines. I HAVE THE BEST FAMILY EVER!!!!!!!!
The ambulance arrived shortly, thank goodness mom had gone up to my room and got my robe for me, because the one ambulance driver was pretty hot :) They asked me a few questions and loaded me onto the bed and put me in the truck. Mom was going to follow in her truck and bring me some clothes.
The ambulance ride down my driveway was so bumpy and it hurt... every little bump put me inn excruciating pain. So because I have my Dads sense of humor I told the driver that I wouldn't tip him if he kept hitting every bump. We all laughed (but that hurt too!)
When we arrived at the hospital I got wheeled in and the pain was starting to get worse again. Leanne and Jaimie (my sisters for those of you who don't have the pleasure of knowing these two AMAZING girls) showed up to stay with me while my mom gathered some clothes and stuff for me. The nurse came in and shot them a dirty look, like they had no business being there. She asked me what was going on and I told her that I didn't know why I was in so much pain and I explained to her what happened. She told me that "it could be worse because her niece just had open heart surgery, and that is MUCH worse!" I was like OK.... she left the room (not sure where she went but she left and my sisters and I were trying to chat. I remember looking at both my sisters and all I could see was fear and panic in their eyes. They haven't really been around me in the hospital so its hard for them to see me in pain and scared.
The nurse came back shortly and took my blood pressure and pulse. She was being a cow and just rude. I told her that I was in a lot of pain and I really wanted something for the pain. I can't remember her EXACT words but it was something along the lines of suck it up and deal with it. Her niece just had open heart surgery... blah blah blah. Then she left again.
So there I am lying in pain with my sisters who were shocked at this nurses attitude (at that point I didn't even care, I thought I was going to die... it hurt SOOOO bad). when the nurse came back in she asked me again why I was in pain. So I told her once again that I didn't know why, it happened so fast I had no idea what was happening. I told her again that I needed some pain medication, and once again she told me that I needed to suck it up because I didn't just have open heart surgery.I told her I am really sorry for your niece but right now I didn't really care. Well I think that was the breaking point for my sisters. They snapped on her and told her to get a doctor. She ran out in a huff... and I think it was about this time that my mom showed up.
The doctor came in and asked me a bunch of questions. He had looked at my file so he knew I had Cushings Disease, and according to him that made me a high priority. We explained to him that I had just came out of the hospital in Edmonton, and that I had a bilateral adrenalectomty. Pretty much immediately he started me on some pain medication (which was AWESOME!!!!) and got someone in to take some blood tests.
He told me that he wanted to keep me in the hospital for a few days. This was on Thursday... I was supposed to be going CAMPING on Friday. That made me sad, but I am glad this happened when it did and not when I was out in the bush somewhere! They moved me into my own room and put me on a liquid diet, my absolute favourite diet of all time (do you sense the sarcasm?) That meant now solid food, only water, tea and soup broth... NOT EVEN NOODLES!!!!!!!!! I was SOOOO hungry too because I hadn't eaten since supper the night before! :( But I drank my soup broth and drank my tea. YUM!! NOT!!!!!!!!!!!!!
My mom and sisters stayed up at the hospital for a little bit but I really wanted to nap. They gave me kisses and told em they would be back in a little while to check on me. My mom is so great she had already ordered my TV and brought me clothes and Jaimie had brought me a couple magazines. I HAVE THE BEST FAMILY EVER!!!!!!!!
Wednesday, April 7, 2010
Finally home... :)
So when mom and I arrived home one of the first things we did was go check on our horses. Mom has some good friends who were kind enough to take care of our horses while we were away. I was still moving around quiet slowly and wasn't able to do anything but pet Luci, but it made me happy just to touch her. My horses and my dogs have always been very therapeutic in my recovery from all my treatments.... probably one of the only reasons that I am still sane!!
I was feeling pretty good once we went back home. My youngest sister Jaimie came over to visit me for a little bit and we just hung out at home. I went to bed that night feeling great... I was even able to walk up the stairs with a fair amount of ease. I remember that my incisions still hurt and I couldn't move quickly but I was getting around fairly good. I took my medication and fell asleep pretty quickly. It felt great to be in my own bed, in my parents house. No hospital noises, and no one coming in my room every hour to check on me... no disturbances :)

So the next morning I didn't wake up until about 9:30am. Immediately when I woke up I was in pain.... I had waited to long to take my prescription for the pain. So I carefully got up... as quickly as I could because the pain was growing by the second. By the time I reached the top of the stairs I was hurting pretty bad and all of the sudden I got really hot.... I started to panic... I didn't know what was happening. I called for my mom but she had let me sleep and had already gone down to the barns to do feed the horses. By the time I reached the bottom of the stairs I was literally dripping because I was so hot, and I can't even begin to tell you how much pain I was in. I started walking towards the kitchen, but by the time I got around the stairs I dropped from the pain. I crawled into the living room and managed to pull myself up onto the couch.
By this time I was terrified, I thought I was dying and I was alone. I tried to lie still on the couch hoping the pain would subside.... but it didn't. Because I was so hot and uncomfortable I started stripping (yes you heard me I was butt ass naked lying on the couch). It didn't help, I knew I needed help and I managed to reach for the telephone that was by the couch and I call my mom.
When my mom answered the phone she thought I was feeling better because I had told her when I went to bed that I was feeling great. My mom answered on like the 3rd ring "Good morning Honey!" I said "Where are you!?" she could sense the panic in my voice and said "Whats wrong?" I told her that I didn't know what was wrong but I was in EXCRUCIATING pain and I was super hot.... she told me she would be right home.... it felt like hours but she was home within 5 minutes. (Oh and don't worry I covered up with a blanket before she got home!)
She told me that I needed to go to the hospital. I told her that I couldn't move because I was in too much pain and couldn't breathe. She went into the kitchen and got me my medication and called an ambulance. She handed me my pills and some water. I couldn't believe how much pain I was in... I was so scared.... I seriously thought I was dying!!!!!!!

Saturday, January 16, 2010
Ready to go HOME!!!
I had to stay in the hospital for a couple days... just so that the doctors could be sure that my levels were stabilized and that I would be able to go home safely. On the morning of May 12th, which was the Tuesday following my surgery, I was told that I would be allowed to leave the hospital. Even though I was still having trouble moving around I was packed and ready to leave by 7am, before my mom had even gotten to the hospital. I was so glad to be able to leave. When my mom arrived I just had to wait to get my vitals taken one last time. It seemed like I had been in the hospital for weeks.... not days.... I was so relieved to be going home! The nurse came in and told me what I had to continue doing while I was at home. I had to take two medications; florinef and prednisone (1 pill each) in the morning, and prednisone (1 pill) in the evening around supper time. They also gave me a prescription of painkillers to take home with me.
My mom helped me pack everything out to the vehicle and she had decided that instead of driving home that night that we should spend the night in Edmonton at the hotel that she had been calling home for the last 5 days. As we were driving out of the parking parkade every little bump, every little crack on the road made me hurt... turning corners, braking, everything caused me pain. I was actually happy to reach the hotel because I was already sore even though I had only been in the vehicle for about 20 minutes. We decided to have breakfast after we had packed my bag to the room. Mom and I sat and had a delicious breakfast in the hotel restaurant. I loved the fact that I was done eating hospital food. After eating WAY too much mom and I went up to our room to rest.... I think we woke up like 4 hours later!
When I woke up mom asked me how I was feeling, and suggested that we go buy me some sweatpants. Because of my incisions I would only be allowed to wear sweats until they healed. Mom wanted to buy me good quality ones so she took me to Lulu Lemon.... we bought a couple pairs and by the time we were done that I was exhausted again. I couldn't believe how fast I ran out of energy! We went back to the hotel and had an early supper, went up to the room and I took my medication and fell asleep.
The next morning my mom and I checked out and started to make our way home. I was still quite uncomfortable but the pain killers helped ease the pain and make the ride home shorter. When we arrived home we relaxed at home for a bit (I was living at my parents again for several different reasons. My sisters came over to see me, I was sooo happy to see them. I was happy to see my dogs and couldn't wait to see my horses. Just the fact that I knew I would be sleeping in my own bed made me happy. I was just glad it was all over and I was FINALLY home again! :)
My mom helped me pack everything out to the vehicle and she had decided that instead of driving home that night that we should spend the night in Edmonton at the hotel that she had been calling home for the last 5 days. As we were driving out of the parking parkade every little bump, every little crack on the road made me hurt... turning corners, braking, everything caused me pain. I was actually happy to reach the hotel because I was already sore even though I had only been in the vehicle for about 20 minutes. We decided to have breakfast after we had packed my bag to the room. Mom and I sat and had a delicious breakfast in the hotel restaurant. I loved the fact that I was done eating hospital food. After eating WAY too much mom and I went up to our room to rest.... I think we woke up like 4 hours later!
When I woke up mom asked me how I was feeling, and suggested that we go buy me some sweatpants. Because of my incisions I would only be allowed to wear sweats until they healed. Mom wanted to buy me good quality ones so she took me to Lulu Lemon.... we bought a couple pairs and by the time we were done that I was exhausted again. I couldn't believe how fast I ran out of energy! We went back to the hotel and had an early supper, went up to the room and I took my medication and fell asleep.
The next morning my mom and I checked out and started to make our way home. I was still quite uncomfortable but the pain killers helped ease the pain and make the ride home shorter. When we arrived home we relaxed at home for a bit (I was living at my parents again for several different reasons. My sisters came over to see me, I was sooo happy to see them. I was happy to see my dogs and couldn't wait to see my horses. Just the fact that I knew I would be sleeping in my own bed made me happy. I was just glad it was all over and I was FINALLY home again! :)
Tuesday, November 10, 2009
What I remember the days after my surgery.........
This is a picture of the adrenal glands and how they sit on your kidneys
This is a real picture of the adrenal glands (not mine).So again I don't remember a lot after my surgery. I do remember asking the doctors if I could get up.... they laughed at me and simply said "No." I was on some pretty heavy painkillers for the first bit which I assume is why I don't remember very much.
I do remember that my stomach was quite sore... almost felt like I had done a MILLION sit
ups... not that I have ever done that many but you get the point. I had 8 incisions in my stomach
This is NOT me... but this is similar to the incisions that I had, except I had 8 not 6.... I had one in the center of my stomach right below my sternum bone... that was probably the most painful one.... the doctor had made an incision then had to later extend it because he couldn't get to where he needed to with the first cut.
I remember waking up and my Mom, my Aunt and my Cousin Tahlia were all there. I remember asking the doctor if I could get up, and they just laughed then I fell asleep again. I drifted in and out of being awake for a bit. The first day that I really remember I remember being quite sore but determined to sit up. I remembered the doctors saying that if I got up and walked around, the sooner I would be well enough to go home. So my mom helped me sit up in my bed.... which was extremely painful.... you don't realize how important your stomach muscles are until something happens to them! I sat up in my bed for a bit then I had my mom help me up. I couldn't stand straight because it felt like I would rip out all my stitches.... so I "granny walked" to the bathroom. Let me tell you... that was a scary site.... my hair was everywhere, my face well lets just say no make-up.... and ya I looked awful..... I was finally able to see the damage myself.... Up until this point I wasn't able to see my stomach very well. I knew there were bandages on my incisions but I couldn't see all of them. I lifted up my very stylish hospital gown and got to see all 8 incisions at once.
My first thought was "Man I look like Frankenstein!" I honestly wanted to cry.... my body is so scarred and damaged.... and I know it won't ever go away.... I will have these scars forever. I hate my body, and there is nothing I can do about it. I could see the blood leaking through some of the gauze, and underneath the gauze I had tape, then under the tape I had stitches. I was only in the bathroom long enough to look at my battle scars and to go pee... I had my mom knocking on the door asking if I was okay. I was getting pretty good at manoeuvring the IV pole around the small area in my room. Walking to the bathroom and back was enough for me at that point. I had to lie back down for a bit. My mom helped me get back into bed... there was a real trick to getting in and out of my bed without hurting my stomach. first I sat down on the bed facing the window, next I turned my body and held onto the railing of my bed and SLOWLY eased myself down. The first couple days I needed my moms help because it hurt to much to do it on my own.
Over the next couple days I had my mom help me get up and go for "walks". Our walks at first were only around the ward... that is all I could handle. My mom was VERY encouraging, I remember the first day that I was able to walk to the elevator she was very excited and kept encouraging me (but also kept reminding me not to over exert myself). I was actually progressing quite fast... even when my mom wasn't at the hospital I would go for "walks" by myself and every time I went I pushed myself to go just a little bit farther. I was still having trouble breathing properly so the doctors had me blow into this little hose and there was a little ball inside of it with a happy face on it that when I would blow into the hose I was supposed to hold it between 2 lines for 5 seconds. I was like "Seriously? This will be EASY....!"... well let me tell you it was not. I couldn't even do it for for 2 seconds! I blew into the thing about four times and every time the little ball would just fall back down to the bottom... with that stupid little happy face staring at me.... the doctors kept telling me that if I kept practicing eventually I would be able to do it, it was just because I was laying on my back for so long and I just needed to get my lungs in shape again.
Everyday was sort of the same... in the morning they would come do blood work at 6 am, then the nurse would come in and take my vitals, and everyday they would ask if I wanted to shower. It was a chore for me to shower. The water hurt my stomach (because of the incisions), it took me a long time to wash my hair because I would have to take breaks (yes I know this sounds bad, but I honestly got tired just washing my hair!) Then once I was done showering it took me about 10 minutes just to dry off and put the beautiful hospital gowns on (and yes I am being sarcastic about the "beautiful" part). Then I would go back into my room and eat my breakfast (which was usually either apple or orange juice with a little box of Cheerios and milk) and wait for my mom to arrive. Once my mom got there we would sit and visit, go for short little walks, and eventually I was strong enough to venture outside. I was POSITIVE that I would be going home soon, the doctors had said I would be able to leave on Saturday, May 10th, but it never happened. Now it was Sunday and I was POSITIVE that I was well enough to go home. We had to wait for the doctors to come later that afternoon and let me know if I was able to or not... mom suggested that we go for another "walk" so off we went.
About halfway through our walk I started to not feel so well.... so I suggested that we go back to my room so I could lie down. When we got back to the room I went into the bathroom, then all of the sudden I was in pain.... not just a little bit.... A LOT!!! I tried to breathe deeply but it wasn't helping.... I stumbled out of the bathroom and leaned up against the bed, I thought I was going to pass out from the pain. I told my mom to get a nurse.... QUICKLY!!!!!! She ran in a panic to get a nurse. She wasn't sure what was going on but later she told me that she knew I was in pain because my robe was undone at the back and my bare butt was hanging out... she tried to cover me up but I just pushed her away to go get a nurse.... it wouldn't have been so bad but there was a window right beside my bed which gave people in the elevator a plain view! Once the nurse came into my room she asked what was going on.... I told her that I didn't know all I knew was that I was in A LOT of pain... they gave me more pain killers and after suffering for about 15 minutes the pain killers took effect and I was able to rest somewhat peacefully.
Later that night the doctor decided that I needed to have an x-ray done to see if they could determine what had cause my sudden pain attack. A guy came to get me with a wheelchair and wheeled me down to X-ray. A couple hours later they came into my room. They had decided that the reason I was having difficulty breathing was that my lung had collapsed during my surgery (which is fairly normal for having a 6 hour surgery), and the reason I had so much pain in my stomach was because my bowels were not working and everything had backed up inside me. They told me that the bowels are very touchy and if they even get bumped a little bit they tend to stop working. I was told that the surgeon had probably "bumped" my bowels and they stopped working. They would start again but it could take a little time.... I told them that they had better keep the painkillers on hand because I swear that was the WORST pain I had ever been in!
That happened Sunday evening and they told me it would be a couple more days before I would be allowed to go home..... great!
Tuesday, October 6, 2009
Auntie Randas Thoughts on my Post Surgery
Because I don't remember the first couple days following my surgery (probably due to the painkillers I was on!!) Auntie Randa has helped me fill in the blanks.
This is what Auntie Randa has written for me:
This is what Auntie Randa has written for me:"The day Stacy had surgery was very eye opening to me. I had never been at one of Stacy's surgeries so I really didn't know what to expect.
My sister in-law (Stacy's mom) and myself waited for the surgery to be over and after a few hours (close to 6 hours!) the surgeon came out with good news; the surgery went excellent. He was very pleased with the results. After some discussion he left us with the good news and we again waited for Stacy to come up to her room. Within the hour she was brought back and we had our first chance to see her.
Stacy seemed alright, although she was on many painkillers and would fall asleep after just a few minutes. I could tell there was definate discomfort, and she needed medications often to dull the her pain. Once she was in her room and comfortable the Doctor came in to see Stacy and speak to her mom. As with any surgery the aftercare is very important, and Stacy did have some good care. Her pain was significant but she handled it very well.
The second day Stacy started running a fever and her pain was not getting any better. Her primary care Doctor came back and adjusted her meds. Because Stacy hardly complains the pain was definately high.
After a couple days Stacy was starting to get up and about, walking around pushing through the pain. She wasn't able to walk far for the first couple days but each time we got up to walk around she went a littler further. Considering the exent of her surgery she was so strong and determined to get better and be able to go home.
I was so impressed with all of the strength Stacy displayed. In spite of her discomfort she got up and about and kept moving towards being able to go home. Stacy did have some other complications, but all in all it was a successful surgery, and she came through strong and healthy. We are so proud of her. "
Thank you Auntie Randa, not only for writing this for me but for being there for me. It meant alot that you and Tahlia came down to support me and my mom... I love you both very much!
PS. I LOVE LOVE LOVE my purse! :)
Friday, September 18, 2009
"You are so strong...."
I love it when people tell me this. It reminds me of how I have overcome so much at a fairly young age... I mean how many 24 years olds can say that they have had 2 brain surgeries, 7 1/2 weeks of radiation, and an adrenalectomy? But the truth is I am not really as strong as people think... I would not have chose this, I got given this. I believe that it has made me a stonger person than I would have been if I did not have this disease, and I like who I have become. Maybe I am strong... but trust me.... it is only because I HAVE to be!

Wednesday, September 16, 2009
I am not who I was Six years ago
"The person that I am now is not the person I was 6 years ago"
This is the truest statement I think I have ever made. Six years ago I had just graduated from high school, dating who I thought was the person I was going to be with for the rest of my life, going to school full time and working full time. I was busy, I was happy, I was healthy.... or so I thought..... in May of 2005 it felt as if my whole world had fallen apart.... Clayton and I broke up, none of my "friends" wanted to hang out, and I was FAT.... it seemed as nothing more could go wrong....
My life has become one that consists of everyday struggles and challenges, the struggle to find answers for the illness that has taken its toll on my body. I have to struggle through endless doctor’s appointments where I am met with cynicism and arrogance, and have been told several times that the treatments they have said would work to cure me have failed miserably. I struggle daily to put on a “happy face” so that my family will not see my pain. I have come to realize that the biggest struggle is within me. How do you keep a positive outlook when you are so angry because your body and mind are letting you down? My story is one I hope that others don’t find themselves living one day but if they do maybe by sharing my struggles it will help them realize that they are not alone. This disease is not a fairytale so there will not be any “happily ever after” but with knowledge and determination there will be a “getting better everyday!” Remember that you may stumble along the way and there will times you want to give-up, it has happened lots to me..... but when that happens take some time for yourself.... talk to those who listen without judgement and don't give up, because if you give up then the disease wins.... if you fight hard and do research and find something that works for you, you can win the battle.....
This is the truest statement I think I have ever made. Six years ago I had just graduated from high school, dating who I thought was the person I was going to be with for the rest of my life, going to school full time and working full time. I was busy, I was happy, I was healthy.... or so I thought..... in May of 2005 it felt as if my whole world had fallen apart.... Clayton and I broke up, none of my "friends" wanted to hang out, and I was FAT.... it seemed as nothing more could go wrong....
My life has become one that consists of everyday struggles and challenges, the struggle to find answers for the illness that has taken its toll on my body. I have to struggle through endless doctor’s appointments where I am met with cynicism and arrogance, and have been told several times that the treatments they have said would work to cure me have failed miserably. I struggle daily to put on a “happy face” so that my family will not see my pain. I have come to realize that the biggest struggle is within me. How do you keep a positive outlook when you are so angry because your body and mind are letting you down? My story is one I hope that others don’t find themselves living one day but if they do maybe by sharing my struggles it will help them realize that they are not alone. This disease is not a fairytale so there will not be any “happily ever after” but with knowledge and determination there will be a “getting better everyday!” Remember that you may stumble along the way and there will times you want to give-up, it has happened lots to me..... but when that happens take some time for yourself.... talk to those who listen without judgement and don't give up, because if you give up then the disease wins.... if you fight hard and do research and find something that works for you, you can win the battle.....
30 Things About My Invisible Illness You May Not Know:
I have "met" alot of "Cushing's Buddies" and other people that have suffered through what I have or are going through what I have and they have been a GREAT support! One of my "Buddies" had posted this and I "stole" it from her.... thanks Susan Kate.....
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Cushing's Disease before my Adrenalectomy/Adrenal Insufficiency (Addison's Disease) after my Adrenalectomy. My Adrenalectomy was performed on May 8th, 2008
2. I was diagnosed with it (Cushing's Disease) in the year: 2005
3. But I had symptoms since: When I look back I guess the sysmptoms started to show in 2003.
4.The biggest adjustment I’ve had to make is: accepting the way I look, I still have not done so
but I am getting better
5. Most people assume: that if I would "just exercise more and eat less" that I could lose the weight the Cushing's put on me, and that my muscles would get stronger, and then I would be all better, however this is not true, I am on steroids that make it almost impossible for me to lose weight.
6. The hardest part about mornings are: getting up... I never feel rested.... I can never seem to get more than 6 hours of sleep per night.... most times its less
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: hmm.... getting to sleep early
10. Each day I take __ pills & vitamins. (No comments, please) now I am down to a total of 3 pills per day
11. Regarding alternative treatments I: am interested in learning about them, but need to put my trust in the proven treatments that are currently keeping me from going into a coma or dying.
12. If I had to choose between an invisible illness or visible I would choose: neither....
13. Regarding working and career: It has been hard but I have gone back to work after each surgery and radiation treatments.... I am now working 1 full time job and 1 part time job. I am tired ALOT but I push myself to do it....
14. People would be surprised to know: that I believe I got this disease for a reason and it has made me who I am and I like who I am
15. The hardest thing to accept about my new reality has been: That I am fat... oh and after my last surgery (adrenalectomy) I was told I am not allowed to go to Brazil like I had planned.... but you just wait.... I will.....
16. Something I never thought I could do with my illness that I did was: I am not sure.....
17. The commercials about my illness: there are none... YET!
18. Something I really miss doing since I was diagnosed is: being as physically active as I used to be... playing hockey, baseball, etc.
19. It was really hard to have to give up: I haven't really given anything up.... just have to do it in moderation... I am not as active but I try.... ok thats a lie..... I am not as social as I once was, I can't get over the idea that I am just a fat slob and thats what people see when I go out.... I am working on it tho... I am starting to go out more.......
20. A new hobby I have taken up since my diagnosis is: starting a Cushing’s support group on facebook, researching Cushing's and Addison's, writing a blog....
21. If I could have one day of feeling normal again I would: MAKE THE DAY LAST FOR ABOUT A YEAR! Then I would do EVERYTHING POSSIBLE!
22. My illness has taught me: Not to judge people by their looks, that God will only throw at you what you can handle (even if at the time you think you can't), and REAL friends and family are all that matter, and they will love you know matter what you look like
23. Want to know a secret? One thing people say that gets under my skin is: "Have you taken your pills?".... sorry mom but it drive me CRAZY!
24. But I love it when people: listen to me and want to learn about my disease (s), when they treat me like I am normal... not sick,
25. My favorite motto, scripture, quote that gets me through tough times is: I have 2... God will only throw at you what he knows you can handle, and "If God leads you TO it he will lead you THROUGH is"... I am not religous but I do believe in a higher power.....
26. When someone is diagnosed I’d like to tell them: Research..... do as much as you can, talk to different doctors, people who have had it or have gone through it..... get as much information as you can before deciding on treatments!
27. Something that has surprised me about living with an illness is: How some family doesn't care enough to become informed.....
28. The nicest thing someone did for me when I wasn’t feeling well was: my mom and Dad (Jim) have done lots for me.... done my chores when I was tired, helped me out financially when I wasn't able to work, listen to me when I am scared/sick/tired.... they have been there through EVERYTHING and I love them very much!
29. I’m involved with Invisible Illness Week because: I want to do whatever I can to make sure that non-ill people are made aware of Invisible Illnesses and the people who suffer from them are REAL PEOPLE WITH REAL FEELINGS, and are NOT just inconvenient burdens who can be set aside out of sight and therefore out of mind.
30. The fact that you read this list makes me feel: like you care.
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Cushing's Disease before my Adrenalectomy/Adrenal Insufficiency (Addison's Disease) after my Adrenalectomy. My Adrenalectomy was performed on May 8th, 2008
2. I was diagnosed with it (Cushing's Disease) in the year: 2005
3. But I had symptoms since: When I look back I guess the sysmptoms started to show in 2003.
4.The biggest adjustment I’ve had to make is: accepting the way I look, I still have not done so
but I am getting better
5. Most people assume: that if I would "just exercise more and eat less" that I could lose the weight the Cushing's put on me, and that my muscles would get stronger, and then I would be all better, however this is not true, I am on steroids that make it almost impossible for me to lose weight.
6. The hardest part about mornings are: getting up... I never feel rested.... I can never seem to get more than 6 hours of sleep per night.... most times its less
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: hmm.... getting to sleep early
10. Each day I take __ pills & vitamins. (No comments, please) now I am down to a total of 3 pills per day
11. Regarding alternative treatments I: am interested in learning about them, but need to put my trust in the proven treatments that are currently keeping me from going into a coma or dying.
12. If I had to choose between an invisible illness or visible I would choose: neither....
13. Regarding working and career: It has been hard but I have gone back to work after each surgery and radiation treatments.... I am now working 1 full time job and 1 part time job. I am tired ALOT but I push myself to do it....
14. People would be surprised to know: that I believe I got this disease for a reason and it has made me who I am and I like who I am
15. The hardest thing to accept about my new reality has been: That I am fat... oh and after my last surgery (adrenalectomy) I was told I am not allowed to go to Brazil like I had planned.... but you just wait.... I will.....
16. Something I never thought I could do with my illness that I did was: I am not sure.....
17. The commercials about my illness: there are none... YET!
18. Something I really miss doing since I was diagnosed is: being as physically active as I used to be... playing hockey, baseball, etc.
19. It was really hard to have to give up: I haven't really given anything up.... just have to do it in moderation... I am not as active but I try.... ok thats a lie..... I am not as social as I once was, I can't get over the idea that I am just a fat slob and thats what people see when I go out.... I am working on it tho... I am starting to go out more.......
20. A new hobby I have taken up since my diagnosis is: starting a Cushing’s support group on facebook, researching Cushing's and Addison's, writing a blog....
21. If I could have one day of feeling normal again I would: MAKE THE DAY LAST FOR ABOUT A YEAR! Then I would do EVERYTHING POSSIBLE!
22. My illness has taught me: Not to judge people by their looks, that God will only throw at you what you can handle (even if at the time you think you can't), and REAL friends and family are all that matter, and they will love you know matter what you look like
23. Want to know a secret? One thing people say that gets under my skin is: "Have you taken your pills?".... sorry mom but it drive me CRAZY!
24. But I love it when people: listen to me and want to learn about my disease (s), when they treat me like I am normal... not sick,
25. My favorite motto, scripture, quote that gets me through tough times is: I have 2... God will only throw at you what he knows you can handle, and "If God leads you TO it he will lead you THROUGH is"... I am not religous but I do believe in a higher power.....
26. When someone is diagnosed I’d like to tell them: Research..... do as much as you can, talk to different doctors, people who have had it or have gone through it..... get as much information as you can before deciding on treatments!
27. Something that has surprised me about living with an illness is: How some family doesn't care enough to become informed.....
28. The nicest thing someone did for me when I wasn’t feeling well was: my mom and Dad (Jim) have done lots for me.... done my chores when I was tired, helped me out financially when I wasn't able to work, listen to me when I am scared/sick/tired.... they have been there through EVERYTHING and I love them very much!
29. I’m involved with Invisible Illness Week because: I want to do whatever I can to make sure that non-ill people are made aware of Invisible Illnesses and the people who suffer from them are REAL PEOPLE WITH REAL FEELINGS, and are NOT just inconvenient burdens who can be set aside out of sight and therefore out of mind.
30. The fact that you read this list makes me feel: like you care.
Tuesday, August 4, 2009
Surgery.... AGAIN
The morning of May 7th 2009 I was woke up at 6 am. The nurse came in to take my vitals. Around 7 am I got up and went downstairs so I could enjoy the beautiful morning (okay so I was having a smoke!), and while I was doing that I also called my mom who was staying at a hotel with My Auntie Randa and her friend Tracy (whom I refer to as Auntie Tracy). She said that she would hurry and get dressed and stuff to get to the hospital. I told her there was no rush because they were not coming until 10ish to prepare me for surgery.
The morning seemed to fly by because the next thing I knew my Mom, Auntie Randa and Auntie Tracy were sitting with me in my hospital room.
Some guy came in and asked me to change into the beautiful hospital gowns that I would have to wear for the next couple days (sense the sarcasm?). I went into the washroom to change out of my nice comfy jammie pants into this hideous hospital gown that makes NO ONE look good.... took one last look in the mirror, took a second to regroup.... I was scared... it was getting close to crunch time..... I was starting to get nervous but I didn't want to let on.... Stay strong girl... if you cry they (meaning my Mom and my Aunts) will cry too... they don't need to worry. I reminded myself that I had the best doctors taking care of me and then I came out of the washroom.
Soon a nurse came in to put the IV in... and then I had to move onto the bed that would transport me into the operating room.... then a nurse came in and told me that they would be moving me out of the room that I had spent the night in to another ward... so my mom had to quickly gather all my belongings and pack them with her....it was about 10:20am... the guy wanted me to get on the bed and they would be transporting me to the operating part of the hospital... all the sudden I felt cold... My mom requested a heated blanket for me and the nurse ran and got one for me. It helped me feel a bit better.... not much but a bit.....
I was holding onto my IV pole as the man turned my bed around and started to make our way out of the ward that I was in, and down to the operating area. My mom and Auntie Randa were allowed to follow part of the way. The guy pushing my bed stopped at the big doors that lead into the operating waiting area. This is where I had to say goodbye to my Mom and Auntie. I kept telling myself on the short journey to these doors that I wasn't going to cry; but as soon as I had to say bye to my mom I started to cry... I didn't want to do this again.... no more pain please! 
The first picture is me saying goodbye to my mom (I was crying by this point) the second is of me giving Auntie Randa a hug before I went through the operating doors.
Then it was time for me to go through the doors, I never looked back. I was trying to wipe my tears so that the poor guy pushing me wouldn't think I was a big baby.... probably too late at that point... but I was trying to save my pride. The guy wheeled me in to the waiting area and parked me in my waiting stall. It was quite busy this morning... people being wheeled in just to sit and wait. As I was waiting I noticed a picture on the wall. It was the most beautiful scenic picture I have ever seen... and it just so happened to be of Brazil. I am planning on going there in the Spring to do some volunteer work at a hospital... I remember thinking... "It must be a sign, this surgery will go great and I will get to see this in the Spring." It helped me calm down a bit.
The anesthesiologist came to talk to me, got me to sign some papers and asked a few questions. Shortly after she left I was being wheeled into the room where I would be having my surgery. It was a small room over in the corner and the lady had to manouver my bed just right just to get it in there! I wasn't used to being in such a small room! Dr McMullen was in there. He looked a little different than when I had met him before... he was in his scrubs.... but he made me feel comfortable... he sounds very confident and I like that in a doctor, especially one that was going to be cutting me open! The next few minutes they put heart monitors on me... I hate the gues stuff they put on you... that stuff doesn't come off easily and it feels nasty! The next thing I remember is them telling me that I was going to sleep.... then it was lights out.
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