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!

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!

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.

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!