So it's been over a year since I've posted an entry here. Not because I haven't started numerous (I've lost count) posts, but because I never felt like I was explaining myself clearly. This week I realized.....who cares? Initially I started this blog for me. I wanted a place to vent my thoughts and frustrations. If no one except me, and my fiance who I know is my biggest fan and supporter (Hi, Chris!), ever reads this then who cares if it's grammatically correct and makes sense?
That being said.....if you're reading this and you're neither of us, then please excuse my rambling, poor grammar and even more poorly thought out posts. :P
Speaking of which, I'm not sure where I was going with this post other than trying to get my feet wet again and to thank the comrades I've found over at the Rheumatoid Arthritis Warrior Facebook page (http://www.facebook.com/#!/arthritiswarrior).
They've really helped me to feel less alone with this disease, and to remember that even though it feels like it, I'm not the only one.
And in case you've stumbled across my blog while researching RA, I'd like to point you in the direction of an amazing website: http://www.rawarrior.com. It has amazing articles and community for anyone living with RA, living with someone with RA, studying RA etc.
That's all for now. Maybe I'll try for a more comprehensive update of my many medical trials and life triumphs later.
Peace and Prayers!
Saturday, October 22, 2011
Thursday, August 26, 2010
Stress and My RA
Ugh. The last few weeks have been overwhelming in both great and bad ways.
My guy and I went to Saskatchewan to visit with his family for the first time and I was TERRIFIED. This caused a really bad night for me on the first night of our trip. Between being up all night on the bus, meeting tons of people who will eventually be my family, and having to balance between making a great impression and trying not to overdo it, I was stressed to the max.
Because I'm newly diagnosed, and don't know yet what my limits are, or are going to be in the future, it's still embarrassing for me that I need help with some very basic things. I found it embarrassing that after a full day I wasn't able to get up and get my own drink for dinner, and that I needed my guy's help to get up and go to the washroom, or get dressed, or do my hair...the list goes on.
Thankfully, his family was amazing. They didn't ever make me feel like I should be feeling embarrassed. They simply accepted that I would take care of myself when I could and that he would help me when I couldn't. It was an extremely welcoming environment to be in, and I'm sure is due to the fact that his mother has some auto-immune diseases of her own. They were curious about what having RA will mean for our life together, and how we plan to deal with it, how it's affecting our life now and also how they could help me be more comfortable over the weekend. It was such a welcoming and helpful atmosphere it was easy to have an amazing weekend with them.
I was having such an amazing weekend I forgot to worry about work.
My bosses are great. It's a family-owned company (not my family, but they treat me like family) and they've been really understanding about the fact that sometimes I simply can't get out of bed. Generally my gauge for going to work is whether or not I can shower and dress myself with minimal help. If I can't, then I call in. If I can, then I go to work and do what I can to be useful around the store.
With as great as my bosses are, I know it's not an ideal situation for them to have to wait and see if I can come in. It's unfair to them and to my co-workers, so we've been trying to come up with a plan that can satisfy everybody. We are trying to avoid the EI path because they just don't pay enough for me to live on. Since EI would pay 55% of my wage if I were to take a disability leave, we are trying to come up with a schedule in which I can work more than 25 hours a week, but not so many that I'm constantly exhausted or in too much pain. It's a nice compromise as soon as we can decide on shifts that will work into their schedule and also work with the hours of the day my body is more mobile.
Gah! Work stress, family stress! I should probably take on a project that means more stress, right?? Like trying to move into a more accessible place?? Seems easy, right?? Wrong!
I currently rent a one-bedroom basement suite. My guy currently has a roommate and rents a 4-bedroom townhouse, but spends 29/30 nights a month at my place. My landlady lives upstairs from me in the main floor of a two-bedroom bungalow. She is currently arranging to move out of town for a year with her job and wants to rent the main floor of the house out. Preferably to us. My guy and I want to move in together, my landlady wants to rent the main floor to us at a reasonable rate, living on the main floor would mean not having to climb stairs to get in and out of the house, my guy's roommate is equally eager to leave their current place and move in with her guy. All seems to be falling into place, right?
I wish.
My guy and his roommate are stuck in an ironclad lease. Their lease states that if they break it (they would be breaking it six months early) then they are responsible for buying out the remainder of the lease AND they would have to pay a fine. Ridiculous! I'm in complete disbelief that they even signed it in the first place. So now we're disappointed, his roommate is disappointed, my landlady is disappointed and everything sucks.
My landlady is so desperate to rent to us that she called this morning and said she had talked to a real estate lawyer friend of hers. They suggested that we find someone to take over the lease and approach the management company with that solution. Extra stress. Now we have to find someone to take over the lease of this townhouse, pack and clean the townhouse, pack and clean my apartment, move three people, and THEN find someone to rent the unit I'm currently in. STRESS!
Did I mention we need to complete this all in 5 weeks? Frack.
Stress is eating me alive right now. My joints are complaining all over. Stress always sits in my shoulders anyway, tension and tightness. Now I have the muscle tightness, added to the joint pain and stiffness. Awesome.
I'm just going to keep taking it a day at a time. That's all I can do. My guy is an amazing source of strength and support for me and that helps tremendously. I'd be lost without him to center me. One day at a time.
My guy and I went to Saskatchewan to visit with his family for the first time and I was TERRIFIED. This caused a really bad night for me on the first night of our trip. Between being up all night on the bus, meeting tons of people who will eventually be my family, and having to balance between making a great impression and trying not to overdo it, I was stressed to the max.
Because I'm newly diagnosed, and don't know yet what my limits are, or are going to be in the future, it's still embarrassing for me that I need help with some very basic things. I found it embarrassing that after a full day I wasn't able to get up and get my own drink for dinner, and that I needed my guy's help to get up and go to the washroom, or get dressed, or do my hair...the list goes on.
Thankfully, his family was amazing. They didn't ever make me feel like I should be feeling embarrassed. They simply accepted that I would take care of myself when I could and that he would help me when I couldn't. It was an extremely welcoming environment to be in, and I'm sure is due to the fact that his mother has some auto-immune diseases of her own. They were curious about what having RA will mean for our life together, and how we plan to deal with it, how it's affecting our life now and also how they could help me be more comfortable over the weekend. It was such a welcoming and helpful atmosphere it was easy to have an amazing weekend with them.
I was having such an amazing weekend I forgot to worry about work.
My bosses are great. It's a family-owned company (not my family, but they treat me like family) and they've been really understanding about the fact that sometimes I simply can't get out of bed. Generally my gauge for going to work is whether or not I can shower and dress myself with minimal help. If I can't, then I call in. If I can, then I go to work and do what I can to be useful around the store.
With as great as my bosses are, I know it's not an ideal situation for them to have to wait and see if I can come in. It's unfair to them and to my co-workers, so we've been trying to come up with a plan that can satisfy everybody. We are trying to avoid the EI path because they just don't pay enough for me to live on. Since EI would pay 55% of my wage if I were to take a disability leave, we are trying to come up with a schedule in which I can work more than 25 hours a week, but not so many that I'm constantly exhausted or in too much pain. It's a nice compromise as soon as we can decide on shifts that will work into their schedule and also work with the hours of the day my body is more mobile.
Gah! Work stress, family stress! I should probably take on a project that means more stress, right?? Like trying to move into a more accessible place?? Seems easy, right?? Wrong!
I currently rent a one-bedroom basement suite. My guy currently has a roommate and rents a 4-bedroom townhouse, but spends 29/30 nights a month at my place. My landlady lives upstairs from me in the main floor of a two-bedroom bungalow. She is currently arranging to move out of town for a year with her job and wants to rent the main floor of the house out. Preferably to us. My guy and I want to move in together, my landlady wants to rent the main floor to us at a reasonable rate, living on the main floor would mean not having to climb stairs to get in and out of the house, my guy's roommate is equally eager to leave their current place and move in with her guy. All seems to be falling into place, right?
I wish.
My guy and his roommate are stuck in an ironclad lease. Their lease states that if they break it (they would be breaking it six months early) then they are responsible for buying out the remainder of the lease AND they would have to pay a fine. Ridiculous! I'm in complete disbelief that they even signed it in the first place. So now we're disappointed, his roommate is disappointed, my landlady is disappointed and everything sucks.
My landlady is so desperate to rent to us that she called this morning and said she had talked to a real estate lawyer friend of hers. They suggested that we find someone to take over the lease and approach the management company with that solution. Extra stress. Now we have to find someone to take over the lease of this townhouse, pack and clean the townhouse, pack and clean my apartment, move three people, and THEN find someone to rent the unit I'm currently in. STRESS!
Did I mention we need to complete this all in 5 weeks? Frack.
Stress is eating me alive right now. My joints are complaining all over. Stress always sits in my shoulders anyway, tension and tightness. Now I have the muscle tightness, added to the joint pain and stiffness. Awesome.
I'm just going to keep taking it a day at a time. That's all I can do. My guy is an amazing source of strength and support for me and that helps tremendously. I'd be lost without him to center me. One day at a time.
Wednesday, August 11, 2010
A Very Good Place to Start
Well, here it goes. I thought I'd give blogging a go to help me keep my thoughts, feelings and ideas about being recently diagnosed with RA an outlet other than my guy and co-workers (who are probably tired of hearing about it by now). :P
It all started with a bug-bite. We think. Maybe.
On Canada Day 2010 my right eye started to hurt. It was a weird feeling, kind-of like I had pulled the muscle behind my eye. I didn't think much of it; just thought I needed more sleep. The next day we went for a weekend trip to a friend's acreage that we were quite looking forward to. As the weekend wore on, my eye got more and more sore, sensitive to light and swollen. By the time we got back into town on Sunday evening I had agreed to go see a doctor about it. The emerg doctor wasn't sure what was wrong but said it looked like an allergic reaction or infection caused by a bug bite of some sort and put me on some antibiotics.
After 1.5 weeks of antibiotic treatment my eye looked better, but there was little time for celebration.
One Wednesday evening I was on my way home from work when my feet started to feel quite sore. Again, I didn't think much of it. As I work in a retail flower shop, it's pretty much par for the course to have sore feet by the end of the day. I hadn't counted on not being able to walk by the time I made it from the bus stop to my apartment door. It was a little scary and a LOT painful, but I didn't think much of it and went to bed for the night.
The next day I was still stiff, but not as sore, so I went to work. By 4pm I was limping from an unexplained pain in my knees. I left work a bit early and went home. Called the AB HealthLink number and was told that the antibiotics I was on probably suppressed my immune system and that any general soreness in the joints I might usually had was probably feeling amplified.
The following Tuesday I still couldn't get through a day pain-free and went to see my GP. After having a LARGE amount of blood taken for testing we settled in for the hard part. Waiting. A very, very, very long week of waiting. In the meantime I was put on a painkiller that made me feel a little loopy. I didn't like it very much and it didn't seem to be helping very much either.
Finally we got some results. My GP wanted to see me and I was nervous. I'd never had a blood test come back positive for anything before and I was scared about what he was going to tell me. I had tested high in both inflammation (this part wasn't news to me) and in rheumatoid factor. The rheumatoid factor being so high (normal is 20; I was over 100) told my doctor that we were probably looking at RA (rheumatoid arthritis). An auto-immune disease that will ebb and flow over my lifetime.
Terrifying news for me. I didn't really know what it was or what it meant for me. I never would have guessed that it meant living with the kind of pain that can cripple a mostly healthy 20-something, taking a different cocktail of drugs every week until we find something that works to keep my pain manageable (we're pretty close now), waking up and being unable to get out of bed or shower independently some days and being mostly fine on others, learning to use a cane and learning not to be embarrassed that I have to.
All of these are things I've had to quickly adapt to over the last 3-4 weeks. I can't even begin to imagine what I've got coming my way or how adaptive I'm going to have to learn to be. Hopefully I'm up for the challenge and my amazing support system of friends will continue to be there for me as I embark on this new path my life has taken.
It all started with a bug-bite. We think. Maybe.
On Canada Day 2010 my right eye started to hurt. It was a weird feeling, kind-of like I had pulled the muscle behind my eye. I didn't think much of it; just thought I needed more sleep. The next day we went for a weekend trip to a friend's acreage that we were quite looking forward to. As the weekend wore on, my eye got more and more sore, sensitive to light and swollen. By the time we got back into town on Sunday evening I had agreed to go see a doctor about it. The emerg doctor wasn't sure what was wrong but said it looked like an allergic reaction or infection caused by a bug bite of some sort and put me on some antibiotics.
After 1.5 weeks of antibiotic treatment my eye looked better, but there was little time for celebration.
One Wednesday evening I was on my way home from work when my feet started to feel quite sore. Again, I didn't think much of it. As I work in a retail flower shop, it's pretty much par for the course to have sore feet by the end of the day. I hadn't counted on not being able to walk by the time I made it from the bus stop to my apartment door. It was a little scary and a LOT painful, but I didn't think much of it and went to bed for the night.
The next day I was still stiff, but not as sore, so I went to work. By 4pm I was limping from an unexplained pain in my knees. I left work a bit early and went home. Called the AB HealthLink number and was told that the antibiotics I was on probably suppressed my immune system and that any general soreness in the joints I might usually had was probably feeling amplified.
The following Tuesday I still couldn't get through a day pain-free and went to see my GP. After having a LARGE amount of blood taken for testing we settled in for the hard part. Waiting. A very, very, very long week of waiting. In the meantime I was put on a painkiller that made me feel a little loopy. I didn't like it very much and it didn't seem to be helping very much either.
Finally we got some results. My GP wanted to see me and I was nervous. I'd never had a blood test come back positive for anything before and I was scared about what he was going to tell me. I had tested high in both inflammation (this part wasn't news to me) and in rheumatoid factor. The rheumatoid factor being so high (normal is 20; I was over 100) told my doctor that we were probably looking at RA (rheumatoid arthritis). An auto-immune disease that will ebb and flow over my lifetime.
Terrifying news for me. I didn't really know what it was or what it meant for me. I never would have guessed that it meant living with the kind of pain that can cripple a mostly healthy 20-something, taking a different cocktail of drugs every week until we find something that works to keep my pain manageable (we're pretty close now), waking up and being unable to get out of bed or shower independently some days and being mostly fine on others, learning to use a cane and learning not to be embarrassed that I have to.
All of these are things I've had to quickly adapt to over the last 3-4 weeks. I can't even begin to imagine what I've got coming my way or how adaptive I'm going to have to learn to be. Hopefully I'm up for the challenge and my amazing support system of friends will continue to be there for me as I embark on this new path my life has taken.
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