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!

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 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!

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!