Sunday, July 29, 2018

Summer Skin

So, I've been a terrible blogger over the summer. But I had a recent hospital visit so I thought I would fill you in on that. I started having blood in my urine about a week ago. I went to my family doctor and he suspected a urinary tract infection so I started a course of antibiotics. A week later I was still peeing blood so my Hemophilia Clinic advised me to go to the emergency room to get some plasma. 
I left work, came home and got my hospital bag and headed to the foothills hospital. The emergency room is always intense. There was a lady next to me in agony, she eventually yelled out that she was in labour and someone finally whisked her away in a wheel chair. There was another guy sitting there just shaking. His friend that he had with him looked so scared. I just sat there eating my muffin cause I let myself eat carbs when Im in the hospital so I take advantage of that a bit.
I eventually got hooked up and then set home 12 hours later. By the 3rd unit my urine had cleared up and I have been feeling much better ever since.
I have a picture of my urine it is completely red it looks like wine. I was going to post it but Zane said I should stop showing people pictures of my urine.  
As far as bleeds go, that one was pretty uneventful so I feel lucky to have it over with.
In other exciting news Zane and I have booked a flight to Maui in October. The fun thing about having hemophilia is stressing about what will happen when you get a bleed in other places. I got in touch with the Hemophilia Clinic in Honolulu and they gave me some great advice. Zane and I are really looking forward to our trip. Now all I have to do is stress about losing weight and Im all set!
I hope you are all having a happy and healthy summer!! 

Tuesday, June 5, 2018

201-266

So, it was the Janeway Telethon the other day. The Janeway is the Childrens Hospital in St. John's, Newfoundland. They raised more that 3 million dollars for the hospital. Seeing the telethon all over facebook reminded me of the year and a half my mother and I spent it the Janeway. I always say my mother and I because she was by my side the whole time and I'm sure felt everything I was feeling. 
That time in my life was  by far the worst time in my life. When I was younger I would always think about how hard it was for me but I never really realized how hard it was on my whole family. My dad flew out from Fort McMurray and spent months with me, my sister came out and stayed in the hospital bed next to me for a few weeks. My aunts and uncles drove 9 hours across the island to bring me teddy bears and toys. My friends called me and sent me get well cards I think every room in my room at the hospital was covered in cards and I had so many teddy bears we had to carry them out in garbage bags when I was finally released. I still have my hospital bracelet from that time and I still remember my Janeway number it was 201-266 and I was on unit 2B.
The telethon also made me think about the bad times. The first time I was admitted it was at night time. A sweet nurse came in and asked if I ever had morphine before. After 5 tries they got an IV in and they gave me morphine for the pain. I put my hand out and told my mom to hold my hand because I felt like I was floating up off the bed. The next day I couldn't pee, a side effect from the morphine so three nurses held me down while a lady named Jean inserted a catheter. To this day that was the worse procedure I ever had. Anyways, I was then admitted to the constant care room. There was an extra bed for mom and a little nurses desk right in my room. Someone was there 24/7 and I remember being in and out of consciousness. The next few weeks I was pumped with plasma, antibiotics, pain meds. I got x rays, CT Scans, an MRI and worst of all a barium enema. Barium is this thick white substance that taste like grated up chalk. If it wasn't being pumped into me then I was forced to drink it. One time mom felt so bad for me trying to choke it down she drank some of it for me just to get rid of it. 
Somehow after all of that I survived. I lived to tell the tale of the wonderful nurses and doctors who cared for me and supported me and my family during that very difficult time. I am so grateful that Newfoundland has such a great hospital like the Janeway. 

You can learn more or donate here http://janewayfoundation.nf.ca/ways-to-give/

Wednesday, April 18, 2018

Nanny

So, My Nanny is turning 90 years old this month! My two sisters and I are travelling to Newfoundland to celebrate with her. I looked at several different stores but I still haven't been able to find a 90th Birthday Card. But that's the wonderful thing about my Nanny, she doesn't want a fuss made and she will appreciate just having her family around her. She isn't overly concerned with presents and gifts.
I was lucky enough to grow up just 5 minutes away from Nanny. I actually lived with her for a whole year when my mom and dad first got a divorce. My nanny took over when my mom was working a lot. She cooked and cleaned for me and my sister. She taught us how to cook and took me to my first brownies meeting. My nanny has 5 children, 13 grandchildren and 12 great grandchildren but she always makes time for each one of us and makes us feel special.
Growing up I had a lot of health problems and my Nanny always had a way of making me feel better. For a sore throat she would make me honey, lemon and ginger tea. If I had a bleed she would let me have a sleepover with my cousin Sara and we would make our famous peanut butter and gum drop rice krispie squares. 
Nanny had a special remedy for everything and always managed to make me feel better no matter what. She has been a huge source of strength for all of us. Each grandchild has their own special memories of her. My sister would love it when she would take her for chips and pop and they would sit by the ocean and snack and chat.
I always loved how cool and calm she would be when she visited me in the hospital. She would come in with a bag full of snacks and her navy blue coat on. She could poke her head in at the desk and find out which room I was in. I could always see her from across the hall and I would breathe a sign of relief when I saw her coming because I felt like everything would be ok.
I pray my Nanny has a great birthday. I hope she knows how loved she is and how grateful we are for her! Happy 90th Birthday Nanny!


Thursday, April 5, 2018

Miracles from Heaven

So, I was watching the movie Miracles from Heaven. It took me about 4 days to watch it because I had to turn it off and wait a day before I could start again. It really hit home for me and it broke my heart. The movie is about a little girl who gets sick and spends a lot of time in the hospital and the impact it has on the whole family. I spent a year in the Janeway Childrens Hospital when I was 12 years old. When I think about that time in my life I think about my mother. 
She had a way of being in the hospital with me and making it feel like it was normal. She didn't act like we were victims, or we were enduring hardships. She just complained about the hospital food and fell asleep in a big recliner next to me and made it seem like it was just another day. I never heard her complain about all the work she was missing, all the money it was costing her and all the time she had to spend sitting in a chair watching me cry in pain, watching me get sicker and sicker and watching doctors poke and prod at me every day.
I am grateful for that time in a small way because it showed me the absolute best side of my mother. She really rose to the occasion and couldn't of handled the situation any better. 
I always think of the time mom and her best friend Gwen went out for supper and then they came to the hospital to say good night to me. Mom could tell I was a bit down so she asked me to go for a wheelchair ride. She pushed me around the old Janeway hospital until we got to a small play area. Mom parked my chair and started playing with some of the toys to entertain me. She crawled in this little play house and I finally smiled. We could hear footsteps coming down the hall so mom tried to get out but she was stuck in the little play house. We laughed so hard but mom still couldn't get out so she reached her hand out and closed the door until the people in the hallway passed. I can still picture her squeezed into that little play house trying not to laugh. I could blog all day about how wonderful my mom was to me. Shes not feeling well now and I feel so helpless. I wish I could cheer her up like she did for me all those years. 

Monday, February 19, 2018

Mental Health

So, I thought I would take some time today and write a post about depression. It is not my favorite subject to talk about but I feel like I have to. A friend of mine in the Hemophilia community recently committed suicide. I was in complete shock when I found out. I think it is important that people feel like they can talk about it. So here I am talking about it.

I was diagnosed with depression in my last year university I was about 22 years old. I found it hard to get out of bed and I stopped wanting to leave my room. Leading up to being diagnosed with depression I had endured years of being in an out of the hospital, thousands of blood transfusions and years in the hospital. So I don't think it was a surprise to doctors and family and friends when I was diagnosed with anxiety and depression.

I think a lot of people with chronic illness experience depression. Its hard being sick on an off, my illness is so unpredictable. I also hate the affect it has on the people who love me. They worry about me and it causes them stress and that causes me so much guilt. I often say I wish I could be sick in a vacuum. I wish I could just go to the hospital by myself come home and sleep it off without Zane having to take time off work, without my dad having to spend all day with my in the hospital and without my family and friends worrying about me.

The other annoying thing about depression is that the best thing to do is eat salads and exercise but when you are depressed all you want to do is eat ice cream and lie in bed. I don't know if the ordeal of having Hemophilia has caused me to be depressed or if they I would of had depression eventually anyway. I do know the two are not complimentary.

I also know that there is light at the end of the tunnel. Medication, Self care, counselling, and the support of my husband, friends and family has helped me tremendously. If you are reading this and you are depressed, it does get better, there is help out there and I promise the sun will shine again eventually.


Sunday, October 15, 2017

Managing Expectations

So, when you have a chronic illness you not only have the joy of dealing with how you feel about your illness, you also have the added bonus of dealing with how other people feel about your illness.
Everyone has their own way of dealing with illness. I think a lot of people in my life have reached a level of desensitization my mother and father for example, I feel like I could call and tell them anything and they would just say oh. I think its a coping mechanism. I use to do that a lot when I was a kid. I would pretend I didn't have a bleed so I could go to a birthday party or go outside and play. That's another thing about having a chronic illness you do a lot of pretending. You pretend you are ok when you aren't because you know people are sick of hearing about how sick you are. You pretend you aren't devastated every time you have to miss work and events over and over again. 
The thing is it might get easier for my family to hear I'm sick but for me its almost like its getting harder. I guess when I was a kid I had more support, if I missed school it didn't matter and I didn't have to worry about cooking or cleaning. Now its just Zane and I and when I get sick I have to call a cleaning lady and the dogs don't get walked as much as they would like and my laundry falls way behind. Having a chronic illness is no picnic. My fear is that I will turn into a grumpy, bitter old lady. I am trying to be grateful and pleasant. Some days are just harder than others. 

Friday, October 13, 2017

Hello from the other side

So, today is Friday. One week from my blood transfusion. I feel awful. My heart rate is 127, my blood pressure is 138/98. I get tired just walking up the stairs. I sleep for abut 12 hours then I nap for a few hours then I lie around all day.
My iron is still low and my Hemoglobin is at 113 it should be 150. Im tired and honestly quite depressed. I hate missing so much work. Every night i walk halfway up the stairs, then I catch my breath on the landing then I waslk up the rest of the way. I lie n bed and pray I'll feel better in the morning but I don't. I also have so much guilt. I feel so bad for the strain I place on Zane. He has to miss work and work twice as hard around the house. I just hate this disease it takes so much out of me