In September of 2010 I started on Actemra. My Rheumatologist gave me a choice between Rituximab, or Actemra. After researching both I thought that Actemra was a better fit for me. In order to go onto Rituximab under the PBS in Australia you have to be on Methotrexate to take Actemra. I had, had a bad reaction to the MTX in the past so was not in a big hurry to go on it again. I figured what the hell, I am going to put off taking that crap for as long as possible. SO against her better judgement my Rheumy put me on Actemra.
I have to say that I was very nervous starting it. A good Facebook friend of mine helped me through the nerves of starting yet another new medication. Actemra was my first go with an infusion medication. During my first infusion I felt a bit nauseated and was given medication for it. So after the infusion I was tired and crashed after I got home. I was just really exhausted and wanted to sleep for a week. The next morning when I woke up I felt better than I had in years. In fact there was a stain that one of the kids had made on the carpet in my sons room. I got down on my hand sand knees and scrubbed that stain til it came up. Then I went dancing through the halls just so happy that not only did I have energy I felt fantastic. Over the next month the only pain I had was from damage that has been done from over 15 years with RA. I kept just waiting for the good feelings to wear off, and they didn't. I felt good for an entire month. SO when I went in, in October for my second infusion I was very excited.
I was started on the infusion and for the first 15 minutes everything was fine. Then I started feeling a tightness in my chest. I didn't worry about it too much but thought I should tell the doc so did. Well I told a nurse who told the doc, who then started panicking. Nothing worse to watch a doctor who is in charge of your care panic about something happening to you is NOT FUN. SO the doc in charge of the infusion room decided I had to be admitted. Then started a fight between 3 departments about what was wrong with me and why. Cardiology decided that I had a simple allergic reaction, I agreed with cardiology. Rheumatology decided that I had a heart condition. and General Medicine decided to just ignore me all together. Well during the infusion I was given an injection of Phenergen. After a fight between those departments and the Emergency Department, who refused to admit me, cause I had already been admitted through day surgery I FINALLY got a bed in the Cardiac department. Finally my old rheumy who was on the board of the hospital admitted me. On the day after the infusion I broke out in a rash on the arm that was getting the infusion. I had been pretty convinced from the day of the infusion that I had, had an allergic reaction. After I was discharged from the hospital and saw my current Rheumatologist we decided that I wouldn't try and continue on the Actemra. My Rheumatologist had looked through the research on Actemra and had found that when a woman in the US had continued on the medication after an allergic reaction and it had been fatal. I was really glad that she did the research and told me that. My old Rheumy while I was in the hospital had wanted me to continue on the medication.
We decided to do some blood work to see where my levels were. As it turned out I was feeling so good because I had gone into clinical remission while on Actemra. It was so depressing to find that out after I had been told I could no longer stay on the stuff.
Monday, 28 November 2011
Wednesday, 16 November 2011
The early days of my RA Journey
When I first KNEW that something was wrong with me I was 19. Now I had been sick a lot as a child. In fact I was in the doctors office every other week with an upper respiratory infection, tonsillitis, or strep throat, and an ear infection. I was there so often that my Doctor and his nurses joked that they were going to paint an examination room for me and put my name on the door. Apparently I would ask for a certain room every time. I can remember getting a shot ever visit and being put on Antibiotics. Once he even threatened to put me on a drip because he and my mom thought I wasn't eating enough.
When I was 16 I had my tonsils out and a surgery on my ear. After that every thing seemed to be going well until I was 19. I was working at Honey Baked Ham and was under a lot of stress. I had a manager that would not quit talking about the size of my breasts and whether or not I had ever had sex. It was stupidly insane, and the moment I mentioned sexual harassment the company started trying to get rid of me. I ended up quitting but the crap stayed with me for a long time. During the time my health started doing funny things. I was always tired, and ached all the time. I felt like I had a permanent case of the flu. I went to a doc and was told that she felt I was only tired and needed to go on anti-depressants. Well my mother being the wonderfully supportive person that she was hid that prescription from me. She didn't want her daughter to ever take those evil from the devil pills. People would think the wrong thing about me if I did. I got the doctor to get me a couple of weeks off of work. When I took that note in my manager, the one who was harassing me tried to refuse me the time off. He was told that legally he couldn't and I would have to be given the time off. Well they did find a way to "write me up" when I got back... I like an idiot believed a fellow employee when she told me she would do my closing duties since I had to leave at 3 instead of 5. Well she didn't and I was written up for it.
Finally like I said, I left that job, it was a nightmare anyway. I started having aches and pains, but didn't say anything cause why bother. The last time I brought it up to a doc she told me I was just depressed. Now around this time in my life I was helping to take care of my sisters oldest son. She had walked out on him and my parents kept him. I was basically the live in nanny. Fun, it was not, but it was life. Stress was the main emotion in my house. My parents were constantly fighting over my sister. I had given up going to University to help raise my nephew. I was not allowed to have a life outside the house. The one time that I tried to have lunch with a friend and go to a movie during the day I was yelled at for over an hour by my mother. She called me selfish and railed on me for ages. Why you might ask? Well because she had to drive herself the 10 minutes it took to get my nephew from school by herself. So I just lived with the symptoms of my disease. Of course at the time I didn't know much about RA. Someone had told me that you could get arthritis at a young age and you could get a blood test to see if you had it. Little did I know what was laying ahead for me. My mom and I started going to a church and I really enjoyed it. I started praise dancing and loved the friends and relationships I developed. It didn't matter to me anymore that I didn't really have a life outside of my parents. They didn't want me to and I had no way to support myself. I was lead to believe that if I did leave I would have to take my nephew with me, and I had no real skills to support us with. If I did anything wrong, my mother would go off. Once, I asked her not to speak badly about my father to me and man did I regret that. She walked half way across the parking lot we were in and yelled at the top of her lungs that I was nothing but a damn bitch who was worthless. Never before had I felt that embarrassed in my life.
Now I will admit we were going to a church that believed in the laying on of hand and prayer. I still to this day believe in prayer and my faith though battered is still alive, even if it is on life support right now. The church we were going to had a split. The pastor that we felt drawn to left and started having a Friday Night Bible Study. We went faithfully and followed him to churches that he preached at on Sundays. We did this for a long time, until he had a church invite him in to have a permanent place for his Friday Night Service. Now I loved this church, and I love the pastor and his wife to this day. Ed if you or Tina ever read this, you held me up at times that I really needed it, and I will always thank God for bringing you into my life. I had a place to dance and talk. A place where I was not looked at as a child. Every church friend until this time had known me since I was 4 and still looked at me as a child. None of them would or could see me as a young adult. Needless to say it was hard. I was helping to raise a child and had no outlet with people who thought that I was even an adult. Ed and Tina Hendrix changed that for me.
During these bible studies I was introduced to a woman who had RA. At the time I didn't know what I had such a need to pray for this woman. At every service she would be brought up and prayed for. I can remember having such a NEED to be there every time praying over her and with her. I was so deep in me that I needed to be that. Again at the time I had no idea why. She had claw hands and walked with a limp. At least that is what I remember the most about her physical proof of her RA.
SO slowly my symptoms came on. After a couple years of the fatigue and aches we were heading to Florida on a trip. Now my mother had to go on a Vacation every 4 months. It was basically the only way anyone could live with her. If we pushed that trip to 5 month between she started picking fights with my dad and refusing to eat. I remember stopping at a gas station to check the air pressure on my tires. I knelled down to check and something happened to my left knee. The pain was so intense that I very nearly passed out. It took weeks to get it back to normal where I could walk again. Then things would start happening, like I would wake up and my hand would be clawed. I would have to run it under hot water and force it open. In hindsight, that probably wasn't the best thing I could have done for my body, but I did it, time after time. I would be walking and my foot would snap or something and feel like it was broken in half. So this went on til I was 24 I think. The time lines are so fuzzy for me. I can remember once my dad looked at me and told me he thought I was just "allergic" to work. He had me take a golf cart apart and the next day I couldn't even move. In fact about 6 months went by with my not being able to get out of bad. My sister decided I needed to go to her doctor. I had no insurance and didn't want to go. Well apparently I was so bad off that my parents insisted. I told her doc about all my symptoms and he said I needed to be tested for RA. So he did the blood test. I was to go back in a week to get my results.
The day I went back for them I was made to wait for over 3 hours. I finally got so frustrated that I just left without getting my results. When I got home I called the office and spoke to the doctors nurse. I begged her for my results. She wouldn't give them to me, but after I explained that I had been there so long and still didn't know she got permission to give them to me.
There is was, I got the diagnosis of Rheumatoid Arthritis... I was pretty bad at this stage. There were things I didn't even realise. Like my parents had noticed I couldn't use my fingers very well anymore. Well my parents got home from wherever they went that fateful day. My dad sat down across from me and asked WELL. I looked at him and said "I have Rheumatoid Arthritis". I swear I will never forget the look he gave me and the sound of his voice when he said "Of course you do" anyone could tell that.
I was like, HUH, you just not two weeks ago accused me of "pretending" to be "allergic to work"
So then came living my life with a diagnosis I could do absolutely nothing about.
When I was 16 I had my tonsils out and a surgery on my ear. After that every thing seemed to be going well until I was 19. I was working at Honey Baked Ham and was under a lot of stress. I had a manager that would not quit talking about the size of my breasts and whether or not I had ever had sex. It was stupidly insane, and the moment I mentioned sexual harassment the company started trying to get rid of me. I ended up quitting but the crap stayed with me for a long time. During the time my health started doing funny things. I was always tired, and ached all the time. I felt like I had a permanent case of the flu. I went to a doc and was told that she felt I was only tired and needed to go on anti-depressants. Well my mother being the wonderfully supportive person that she was hid that prescription from me. She didn't want her daughter to ever take those evil from the devil pills. People would think the wrong thing about me if I did. I got the doctor to get me a couple of weeks off of work. When I took that note in my manager, the one who was harassing me tried to refuse me the time off. He was told that legally he couldn't and I would have to be given the time off. Well they did find a way to "write me up" when I got back... I like an idiot believed a fellow employee when she told me she would do my closing duties since I had to leave at 3 instead of 5. Well she didn't and I was written up for it.
Finally like I said, I left that job, it was a nightmare anyway. I started having aches and pains, but didn't say anything cause why bother. The last time I brought it up to a doc she told me I was just depressed. Now around this time in my life I was helping to take care of my sisters oldest son. She had walked out on him and my parents kept him. I was basically the live in nanny. Fun, it was not, but it was life. Stress was the main emotion in my house. My parents were constantly fighting over my sister. I had given up going to University to help raise my nephew. I was not allowed to have a life outside the house. The one time that I tried to have lunch with a friend and go to a movie during the day I was yelled at for over an hour by my mother. She called me selfish and railed on me for ages. Why you might ask? Well because she had to drive herself the 10 minutes it took to get my nephew from school by herself. So I just lived with the symptoms of my disease. Of course at the time I didn't know much about RA. Someone had told me that you could get arthritis at a young age and you could get a blood test to see if you had it. Little did I know what was laying ahead for me. My mom and I started going to a church and I really enjoyed it. I started praise dancing and loved the friends and relationships I developed. It didn't matter to me anymore that I didn't really have a life outside of my parents. They didn't want me to and I had no way to support myself. I was lead to believe that if I did leave I would have to take my nephew with me, and I had no real skills to support us with. If I did anything wrong, my mother would go off. Once, I asked her not to speak badly about my father to me and man did I regret that. She walked half way across the parking lot we were in and yelled at the top of her lungs that I was nothing but a damn bitch who was worthless. Never before had I felt that embarrassed in my life.
Now I will admit we were going to a church that believed in the laying on of hand and prayer. I still to this day believe in prayer and my faith though battered is still alive, even if it is on life support right now. The church we were going to had a split. The pastor that we felt drawn to left and started having a Friday Night Bible Study. We went faithfully and followed him to churches that he preached at on Sundays. We did this for a long time, until he had a church invite him in to have a permanent place for his Friday Night Service. Now I loved this church, and I love the pastor and his wife to this day. Ed if you or Tina ever read this, you held me up at times that I really needed it, and I will always thank God for bringing you into my life. I had a place to dance and talk. A place where I was not looked at as a child. Every church friend until this time had known me since I was 4 and still looked at me as a child. None of them would or could see me as a young adult. Needless to say it was hard. I was helping to raise a child and had no outlet with people who thought that I was even an adult. Ed and Tina Hendrix changed that for me.
During these bible studies I was introduced to a woman who had RA. At the time I didn't know what I had such a need to pray for this woman. At every service she would be brought up and prayed for. I can remember having such a NEED to be there every time praying over her and with her. I was so deep in me that I needed to be that. Again at the time I had no idea why. She had claw hands and walked with a limp. At least that is what I remember the most about her physical proof of her RA.
SO slowly my symptoms came on. After a couple years of the fatigue and aches we were heading to Florida on a trip. Now my mother had to go on a Vacation every 4 months. It was basically the only way anyone could live with her. If we pushed that trip to 5 month between she started picking fights with my dad and refusing to eat. I remember stopping at a gas station to check the air pressure on my tires. I knelled down to check and something happened to my left knee. The pain was so intense that I very nearly passed out. It took weeks to get it back to normal where I could walk again. Then things would start happening, like I would wake up and my hand would be clawed. I would have to run it under hot water and force it open. In hindsight, that probably wasn't the best thing I could have done for my body, but I did it, time after time. I would be walking and my foot would snap or something and feel like it was broken in half. So this went on til I was 24 I think. The time lines are so fuzzy for me. I can remember once my dad looked at me and told me he thought I was just "allergic" to work. He had me take a golf cart apart and the next day I couldn't even move. In fact about 6 months went by with my not being able to get out of bad. My sister decided I needed to go to her doctor. I had no insurance and didn't want to go. Well apparently I was so bad off that my parents insisted. I told her doc about all my symptoms and he said I needed to be tested for RA. So he did the blood test. I was to go back in a week to get my results.
The day I went back for them I was made to wait for over 3 hours. I finally got so frustrated that I just left without getting my results. When I got home I called the office and spoke to the doctors nurse. I begged her for my results. She wouldn't give them to me, but after I explained that I had been there so long and still didn't know she got permission to give them to me.
There is was, I got the diagnosis of Rheumatoid Arthritis... I was pretty bad at this stage. There were things I didn't even realise. Like my parents had noticed I couldn't use my fingers very well anymore. Well my parents got home from wherever they went that fateful day. My dad sat down across from me and asked WELL. I looked at him and said "I have Rheumatoid Arthritis". I swear I will never forget the look he gave me and the sound of his voice when he said "Of course you do" anyone could tell that.
I was like, HUH, you just not two weeks ago accused me of "pretending" to be "allergic to work"
So then came living my life with a diagnosis I could do absolutely nothing about.
Tuesday, 15 November 2011
Why I hated Humira
I had the worst experience ever on Humira, so my story about it isn't a good one. Just wanted to tell everyone that upfront.
When Enbrel quit working for me the Rheumy put me on Humira. Now why she did this I will never know. I mean as she was writing the script out she was saying I really don't like having my patients on this drug. It is one I never prescribe, but she did it anyway. In fact Humira is the ONLY drug I have been on that I felt I needed to make a written list about all the side effects I was having.
I had my first Humira injection on a Wed, within 48 hours I was in pretty bad shape. I was unable to quit shaking. I literally felt like I looked like someone with Parkinson's. I called my Rheumy and she basically told me that I was wrong, this was in fact NOT a side effect of Humira, and I just needed to relax. I was horribly upset by this because Rhaine had her first ever Kindergarten Assembly. I was crushed and heart broken that I was unable to go. I called my doc who got me in for an appt within a couple of hours. My MIL came and took me to the appt. My GP whom I adore. He never blows me off and listens to what I have to say. He spent a great deal of time with me in his office researching Humira. I had been in a lot more pain since taking the shot. What we found out was that Humira in some cases can cause a clinical flare. There was nothing we could do about it other than up pain meds and just try and cope with the shaking. Over the next 4 months the shaking did quit, but that was just the beginning of my symptoms. My Rheumy continually blew me off about my side effects so the Week of my review appt I researched and came up with a list of Possible Side Effects from Humira list.
The Possible Side Effects Were:
Hives, Itching, or Skin Rash
Tingling and Numbness in extremities
Headaches and Dizziness
Abdominal Paik
Agitation
Anxiety
Sores on Breast that won't heal
Confusion
Depression
Fast/Slow/Irregular Heartbeat
Hallucinations
Headaches
Mood or Mental Changes
Source : arthritis-symptoms.com/arthritis-drugs/humira.htm
More Side Effects:
Muscle Cramps or Spasms
Night Sweats
Problems Swallowing
Trouble Thinking
Unexplained Bruising
Joint Pain.
Side Effects I had while on Humira:
Mood Swings
Irritability
Headaches
Dizziness
Involuntary Limb Movement
Petechia
Anxiety
Panic Attacks
Increased Pain
Hand and Finger Numbness
Abdominal Pain
Sores or Pimples on Breasts
Losing Words or Thoughts.
When I walked into the appt I was expecting that she would argue with me. I told her I had a list of side effects and which ones I was having. She immediately asked if the Humira was making me feel better at all. I looked at her and asked, "Well let me ask you this, according to the blood work am I even eligible to stay on this drug?" The answer was No I wasn't I wrote a journal entry after the appointment. This is what I wrote.
Wed 11 August 2010
Saw Dr Wong, Humira is not working and with my bloods & joint review I fail Medicare Standards to keep using it. She wants to put me back on MTX 7.5mg. Then if I can tolerate that well, put me on Rituximab. I have researched Rituximab and I don't want to try it. She said If I can not tolerate the MTX then my only choice is Actemra. It seems like a better option from what little research I have done. I have to be off Humira for 8 weeks to begin infusion treatment. I can double my Tramadol If I need to.
I then wrote out some research about the drugs. I won't go into that in this entry because my next entry will be about Actemra.
So when everything is said and done, Humira made me feel horrid. I was in worse shape after 4 months on it that I was after years of NO treatment at all. Everyone kept telling me I just needed to give it time. When in my heart I KNEW from the first injection that It wasn't working. I knew being as bad off as I was, was a bad thing. I didn't want to take a drug that made me miss things. To this DAY I still feel miserable about missing Rhaine's Assembly that day. She was a bear, and they did a small play about Goldilocks and the Three Bears I think. I will never get that assembly back and that pisses me off.
Monday, 7 November 2011
My Enbrel Experience
My first biological drug was Enbrel. It was quite the fight to get my Rheumy to finally agree to put me on something. Here in Australia you have to show a certain percentage of improvement while on a biological drug in order for Medicare to allow you to stay on it. At the time my CRP had dropped down to about 16. My Rheumy was convinced that it would never drop lower than that, even while on a biological drug. After a month of going back and forth I finally convinced him that I needed something and he agreed to put me on Enbrel. I have to say that at the time I went on the Enbrel my CRP had gone back up to 26. I had to show an improvement of 20% within the first 5 months.
At the time I didn't know a lot about the biologicals and was absolutely terrified. After a few days of research I was ready to scream. I was convinced that Enbrel would kill me, yes funny I know. At the time though I was so desperate for some kind of relief that I just wanted something. I wanted to feel better. I am sure everyone with RA knows that feeling at some stage.
So I was approved to go onto Enbrel. When you are approved, again here in Australia, your Rheumy will call you into the office and arrange for a nurse to teach you how to do the shot yourself. At least this is how my Rheumy handles things. So I was given a few minutes of a lesson. The whole day I had managed to work myself up to quite the panic. So I gave myself my first shot, and got very light headed, my blood pressure spiked cause of how panicked the whole thing made me. Truth is I had a good experience on Enbrel. After just a couple of shots I was doing much better. My bloods improved and I was actually able to wear heels again. I know silly :-).
Now I had some negative reactions while on Enbrel. I had such bad migraines that I was ready to call it quits on the drug and go on my merry way. My husband convinced me that I should try and stick it out. I called the Rheumy who told me the headaches would be self regulating and I would most likely get used to everything. She didn't listen to what I had to say and I was left feeling pretty frustrated. In the end the headaches did ease up some, and honestly it probably was worth it to have some time while I was able to be somewhat normal. After about nine months on it though it quit working.
So in a nutshell I had a fairly good experience but it didn't work for long. And really the only bad or negative side effect I had was the migraines. I also gained some weight while on the drug. I am not sure how that happened since I was eating a whole lot but I did stack on about 10 Kilos.
http://www.enbrel.com/index.jspx
http://www.drugs.com/sfx/enbrel-side-effects.html
I listed two web pages you can go to visit for information.
At the time I didn't know a lot about the biologicals and was absolutely terrified. After a few days of research I was ready to scream. I was convinced that Enbrel would kill me, yes funny I know. At the time though I was so desperate for some kind of relief that I just wanted something. I wanted to feel better. I am sure everyone with RA knows that feeling at some stage.
So I was approved to go onto Enbrel. When you are approved, again here in Australia, your Rheumy will call you into the office and arrange for a nurse to teach you how to do the shot yourself. At least this is how my Rheumy handles things. So I was given a few minutes of a lesson. The whole day I had managed to work myself up to quite the panic. So I gave myself my first shot, and got very light headed, my blood pressure spiked cause of how panicked the whole thing made me. Truth is I had a good experience on Enbrel. After just a couple of shots I was doing much better. My bloods improved and I was actually able to wear heels again. I know silly :-).
Now I had some negative reactions while on Enbrel. I had such bad migraines that I was ready to call it quits on the drug and go on my merry way. My husband convinced me that I should try and stick it out. I called the Rheumy who told me the headaches would be self regulating and I would most likely get used to everything. She didn't listen to what I had to say and I was left feeling pretty frustrated. In the end the headaches did ease up some, and honestly it probably was worth it to have some time while I was able to be somewhat normal. After about nine months on it though it quit working.
So in a nutshell I had a fairly good experience but it didn't work for long. And really the only bad or negative side effect I had was the migraines. I also gained some weight while on the drug. I am not sure how that happened since I was eating a whole lot but I did stack on about 10 Kilos.
http://www.enbrel.com/index.jspx
http://www.drugs.com/sfx/enbrel-side-effects.html
I listed two web pages you can go to visit for information.
Thursday, 3 November 2011
Sometimes we don't realise it
That is my motto with my medication's at the moment.
I didn't realise how much Orencia was helping me until I was 3 weeks overdue for an infusion. My pain levels went up so high during that three weeks, which surprised me, but not nearly as much as my fatigue levels. I got that I didn't have to take so many naps during the day on the Orencia, but I so didn't get that I wasn't dragging through the day anymore.
It just goes to show you that sometimes we just don't see how much something is helping us, until it is gone that is.
I hear so many people complain about the side effects of the medicines, or that they just don't work. When for me at least, sometimes the changes happen so gradually that they are really hard to notice, but they are there.
I know that those of us with RA get to a stage where we just want things to work, but in reality 6 months or so, isn't really that long when we are talking about a disease we will be dealing with for the rest of our lives. I do understand wanting to feel better, believe me I do. I understand wanting our old lives back. I think sometimes we look back and not forward. We have an incurable destructive disease. That disease does not have to take our futures though. Yes it will likely change our futures. I can no longer work, and I really enjoyed the work I did. When I had to quit I had my own home based family daycare. I love children, love being surrounded by them, but I did have to quit. In the year that I was working my disease advanced very quickly. I had more damage in that year than I did the few years before it. So I made the best decision I could for my family and my health I quit. I took a good long look at my life and realised that I wanted to be able to enjoy my life. Yes I loved working but it was taking a toll on me. One I didn't really see till after the damage was done. Since I have quit working and moved and have less stress, physically I am doing so much better. Yes I have daily pain, yes I have permanent damage, but I have my life. My outlook as well as my future have changed. I see the beauty in life without the rush to get things done. No I will never get to go rock climbing and explore caves. I most likely won't get to ever go swimming in the gulf of the coast of MS with the dolphins. I will never get to explore the mountains and the trails n TN in the Smoky Mountain National Park. Those things don't mean I can't enjoy my life though, cause I can still watch the sun rise and set. I can still take the time to watch the leaves fall and regrow. I can notice the trees flowering. Sad thing is I never in the first 30 years of my life noticed that. Seriously until I moved to Australia and settled in I never noticed or saw the beauty of the changing seasons.
I guess what I am trying to say is that maybe we need to try and take the time to notice and see the things we normally wouldn't
I didn't realise how much Orencia was helping me until I was 3 weeks overdue for an infusion. My pain levels went up so high during that three weeks, which surprised me, but not nearly as much as my fatigue levels. I got that I didn't have to take so many naps during the day on the Orencia, but I so didn't get that I wasn't dragging through the day anymore.
It just goes to show you that sometimes we just don't see how much something is helping us, until it is gone that is.
I hear so many people complain about the side effects of the medicines, or that they just don't work. When for me at least, sometimes the changes happen so gradually that they are really hard to notice, but they are there.
I know that those of us with RA get to a stage where we just want things to work, but in reality 6 months or so, isn't really that long when we are talking about a disease we will be dealing with for the rest of our lives. I do understand wanting to feel better, believe me I do. I understand wanting our old lives back. I think sometimes we look back and not forward. We have an incurable destructive disease. That disease does not have to take our futures though. Yes it will likely change our futures. I can no longer work, and I really enjoyed the work I did. When I had to quit I had my own home based family daycare. I love children, love being surrounded by them, but I did have to quit. In the year that I was working my disease advanced very quickly. I had more damage in that year than I did the few years before it. So I made the best decision I could for my family and my health I quit. I took a good long look at my life and realised that I wanted to be able to enjoy my life. Yes I loved working but it was taking a toll on me. One I didn't really see till after the damage was done. Since I have quit working and moved and have less stress, physically I am doing so much better. Yes I have daily pain, yes I have permanent damage, but I have my life. My outlook as well as my future have changed. I see the beauty in life without the rush to get things done. No I will never get to go rock climbing and explore caves. I most likely won't get to ever go swimming in the gulf of the coast of MS with the dolphins. I will never get to explore the mountains and the trails n TN in the Smoky Mountain National Park. Those things don't mean I can't enjoy my life though, cause I can still watch the sun rise and set. I can still take the time to watch the leaves fall and regrow. I can notice the trees flowering. Sad thing is I never in the first 30 years of my life noticed that. Seriously until I moved to Australia and settled in I never noticed or saw the beauty of the changing seasons.
I guess what I am trying to say is that maybe we need to try and take the time to notice and see the things we normally wouldn't
Monday, 24 October 2011
Looking for the silver lining
One thing that in the past I have not been great at is seeing the positive in life. I am trying to turn over a new leaf in this regard. I do not want to see my life as a meaningless, horrible, pain filled existence. I want to live my life to the fullest and enjoy my family. I love my children and my husband. I want to be the best mother and wife I can be. Having RA makes that difficult but not impossible.
The thing is that YES having RA means there are things I can not do. Yes I can't play all the games other parents play. I can't run around or even fill up every day of the school holidays and weekends. I try to choose a couple of activities over a two week holiday and enjoy those times. On the days we stay home we do other things. We watch movies, do scrap booking, cook, and just fill up the days at home.
My kids know a mommy who can't do a lot, but who love them. They have to help out mommy, and sometimes get fed up with it. You know what though? My kids never point at the disabled people. At my daughters old school one of the other children's father was in a wheel chair. Belle my oldest never noticed the wheel chair. She didn't notice that there was something different about the man or the daughter. The little girl didn't have to answer all the question's that everyone else in the class had. It was what it was, and it was not something to be talked about or scared over. My children know people come in all different shapes and sizes and that some people can do things others can't. It is just daily life for them.
Having RA can suck big time, but it can also make you stop and smell the flowers. Those of us with RA are forced to slow down. We are forced to stop and rest, how many people willingly give themselves the right or chance to do that. We have a life that in so many ways is taken away from us. Yet despite that we have the right, and the ability to make the new life we have better. No we may not accomplish all the things we dreamt that we would. We may not have the life that we always wanted, but we can have a good one none the less. We can have wonderful special time with our children and loved one, without having to go out.
I found my silver lining, and I will hold onto it. On the bad days I will try and see that silver lining no matter how bad things gets.
The thing is that YES having RA means there are things I can not do. Yes I can't play all the games other parents play. I can't run around or even fill up every day of the school holidays and weekends. I try to choose a couple of activities over a two week holiday and enjoy those times. On the days we stay home we do other things. We watch movies, do scrap booking, cook, and just fill up the days at home.
My kids know a mommy who can't do a lot, but who love them. They have to help out mommy, and sometimes get fed up with it. You know what though? My kids never point at the disabled people. At my daughters old school one of the other children's father was in a wheel chair. Belle my oldest never noticed the wheel chair. She didn't notice that there was something different about the man or the daughter. The little girl didn't have to answer all the question's that everyone else in the class had. It was what it was, and it was not something to be talked about or scared over. My children know people come in all different shapes and sizes and that some people can do things others can't. It is just daily life for them.
Having RA can suck big time, but it can also make you stop and smell the flowers. Those of us with RA are forced to slow down. We are forced to stop and rest, how many people willingly give themselves the right or chance to do that. We have a life that in so many ways is taken away from us. Yet despite that we have the right, and the ability to make the new life we have better. No we may not accomplish all the things we dreamt that we would. We may not have the life that we always wanted, but we can have a good one none the less. We can have wonderful special time with our children and loved one, without having to go out.
I found my silver lining, and I will hold onto it. On the bad days I will try and see that silver lining no matter how bad things gets.
Wednesday, 12 October 2011
Ah the fun of MTX
Okay so I have to preface this by saying my original Rheumy felt that my reaction to MTX warranted NOT continuing the treatment.
In Australia, Medicare will pay for your treatment (mostly) if you go by certain criteria. I have run out of biologicals that they don't require you to be on MTX to subsidise.
So when I went on Orencia I had to start on MTX AGAIN.
What was my reaction?
Well not what most people experience.
I had hallucination!!!
YEP, let the fun begin.
So I knew that I would most likely have them and had a few the first few weeks. Recently you can add weird dreams to the list of crap I have to deal with, with the MTX.
So what kind of hallucinations?
Well in the last week I have seen, my husband hop out of bed and start searching the bed for something he apparently lost, didn't happen.
I have seen an owl over my bed staring at me during the middle of the night, I'm gonna let you guess if that one happened.
I have seen a dark little person figure standing at out bedroom door. Thought this one was our son, and asked him if everything was alright, he wasn't there.
So those are the ones that stick out most in my memory.
Lets not forget about those waking dreams thing where I swear I have done something that I haven't. Like this morning I could have sworn I put the dog in the laundry room. She usually sleeps in there so as to not have accidents in the house at night. I even actually checked the time. When I got up a couple of hours later, she was in bed with my daughter, the dog.
So I get to continue my hate/hate relationship with MTX. On top of that now I am having constant cramps and can't go too far from a toilet. I am hoping that is more a bug than a reaction though.
When these hallucinations first happened I went to my hubbies GP. I told him what happened. I thought a flower in my room was a teeny tiny itty bitty dragon, don't ask cause I have not idea. Then every time I looked at a towel we had hanging on our wall, it is a really pretty towel with a wolf on it, I could have sworn that wolves ear was eating it's head. Well the very rude, meanie head, poopy doctor said, "Are you sure you didn't get drunk?' No I don't drink ever at all, never have. "You Sure?" Needless to say I told my Rheumy about it, and he said, yep that is a reaction to the MTX lets not take that anymore.
So if your GP or Specialist or anyone tells you, you can't have that particular reaction, they don't know squat!!!
In Australia, Medicare will pay for your treatment (mostly) if you go by certain criteria. I have run out of biologicals that they don't require you to be on MTX to subsidise.
So when I went on Orencia I had to start on MTX AGAIN.
What was my reaction?
Well not what most people experience.
I had hallucination!!!
YEP, let the fun begin.
So I knew that I would most likely have them and had a few the first few weeks. Recently you can add weird dreams to the list of crap I have to deal with, with the MTX.
So what kind of hallucinations?
Well in the last week I have seen, my husband hop out of bed and start searching the bed for something he apparently lost, didn't happen.
I have seen an owl over my bed staring at me during the middle of the night, I'm gonna let you guess if that one happened.
I have seen a dark little person figure standing at out bedroom door. Thought this one was our son, and asked him if everything was alright, he wasn't there.
So those are the ones that stick out most in my memory.
Lets not forget about those waking dreams thing where I swear I have done something that I haven't. Like this morning I could have sworn I put the dog in the laundry room. She usually sleeps in there so as to not have accidents in the house at night. I even actually checked the time. When I got up a couple of hours later, she was in bed with my daughter, the dog.
So I get to continue my hate/hate relationship with MTX. On top of that now I am having constant cramps and can't go too far from a toilet. I am hoping that is more a bug than a reaction though.
When these hallucinations first happened I went to my hubbies GP. I told him what happened. I thought a flower in my room was a teeny tiny itty bitty dragon, don't ask cause I have not idea. Then every time I looked at a towel we had hanging on our wall, it is a really pretty towel with a wolf on it, I could have sworn that wolves ear was eating it's head. Well the very rude, meanie head, poopy doctor said, "Are you sure you didn't get drunk?' No I don't drink ever at all, never have. "You Sure?" Needless to say I told my Rheumy about it, and he said, yep that is a reaction to the MTX lets not take that anymore.
So if your GP or Specialist or anyone tells you, you can't have that particular reaction, they don't know squat!!!
Wednesday, 5 October 2011
Busy Busy Busy
Been a few busy days for our little family. The children are on school holidays until next Tuesday. I have been having fun with them. Well last week, this week we have been hanging out at home. I have been hit with really bad fatigue this week, no wonder why. I have really enjoyed being able to do things with them this school holidays though. I do say though, that I don't wanna see anymore 3D movies cause they give me a bad headache.
Well got a call from my Rheumy. Not sure what is going on but I have to go see her next Wed. Will find out what is going on with my medications and blood work then. I have a feeling it probably isn't good news. Every other time it has been good news she just forwarded my new prescriptions to me. Oh well worrying about it won't change anything so I will jut try to keep my mind off of it. Will know next Wed. afternoon what is going on anyway. If I have to try a new med I have to try a new med. Such is life. I am going to take the good with the bad. At the moment I feel okay. I think my attitude has more to do with it than anything else though. I am in pain, and I am exhausted but I am good. I have a wonderful family and a rood over my head. In the long run things are good. :-) I am going to be devoting or trying to devote more time to myself soon. Next year maybe :-D, when all three kids are in school. When my youngest goes back to pre-school in two weeks things with be getting a bit more hectic for us. I will be taking him in for half a day on Tuesdays so he doesn't miss as much. He has only been going in for Mondays this past term since we live so far from the school now. On the last day of the term I decided to try and make it where he can go more often. It will mean a lot of driving on Tuesdays but my little man is worth it. It may also be worth it to cut out the playgroup where a mother keeps bringing her kid and herself despite have contagious illnesses. I swear in the 4 weeks I went I was exposed to more than in 3 years of the kids being in primary school. How the heck is that even possible?
Well got a call from my Rheumy. Not sure what is going on but I have to go see her next Wed. Will find out what is going on with my medications and blood work then. I have a feeling it probably isn't good news. Every other time it has been good news she just forwarded my new prescriptions to me. Oh well worrying about it won't change anything so I will jut try to keep my mind off of it. Will know next Wed. afternoon what is going on anyway. If I have to try a new med I have to try a new med. Such is life. I am going to take the good with the bad. At the moment I feel okay. I think my attitude has more to do with it than anything else though. I am in pain, and I am exhausted but I am good. I have a wonderful family and a rood over my head. In the long run things are good. :-) I am going to be devoting or trying to devote more time to myself soon. Next year maybe :-D, when all three kids are in school. When my youngest goes back to pre-school in two weeks things with be getting a bit more hectic for us. I will be taking him in for half a day on Tuesdays so he doesn't miss as much. He has only been going in for Mondays this past term since we live so far from the school now. On the last day of the term I decided to try and make it where he can go more often. It will mean a lot of driving on Tuesdays but my little man is worth it. It may also be worth it to cut out the playgroup where a mother keeps bringing her kid and herself despite have contagious illnesses. I swear in the 4 weeks I went I was exposed to more than in 3 years of the kids being in primary school. How the heck is that even possible?
Saturday, 24 September 2011
Feeling Defeated and Deflated!!!
It has been an off week I think. My pain for the most part is okay. Okay in other words I can work through it for the most part, but have had to break down and take the heavy pain killers I have in the evenings. Which makes me feel what I can only describe as hungover when I wake up. So that has left me feeling just plain blah. I am trying to snap out of it and not let things bother me but seem to be failing in this regard.
I have been thinking this week a lot about what I know about RA. Honestly it probably isn't a lot, and again honestly it doesn't bother me that much. I "know" a lot of people who are on a mission to figure out what causes RA or answer the question why me? To be honest I just don't care anymore. In the end it doesn't really matter what caused my RA or why I got it. What does matter is how I decide to live with and treat my disease.
Things I do know about MY RA, cause lets face it, it is different for all of us.
1.) No one else in my family that I know of has or had RA.
2.) I was very young, "too young" to have RA and no one believed that there was anything wrong with me including my family. In fact my father would get so mad at me for not being able to do things that he would say "your just allergic to work" Of course this is because he wanted me to take golf carts and cars apart on my own with very little to no help. I haven't been able to kneel since I was in my early 20's and getting up and down was quite hard. Not to mention that when my RA came on I lost the strength in my hands very quickly.
3.) I have very hard to control RA. I have been on several medications and only 1, yes 1, has totally controlled my RA and halted the progression of it. That medication I proved allergic to and was only allowed 2 months of freedom from my RA.
4.) I have found no foods that have any affect, either positive or negative on my RA.
5.) This one annoys me, I did not, have not, seem to not be able to take weight off despite my RA.
6.) I have learned over the years when I am going to "Flare". Sometimes I can even tell ahead of time if it is going to be a "BIG" flare or a "little" flare.
7.) Like most people I can't seem to pace myself when I am having a few good days.
8.) None of the above matters, because things change so quickly.
In my early 20's I had six months where I was pretty much bed bound. I don't remember much from those months except the pain. I remember one days taking a bath and passing out from the pain. I dealt with that alone because my health and my pain were mine alone. No one else cared that was a part of my life at the time. In fact until I turned 27 and met my husband I carried the weight of my problems on my own. Yes I had family but they had other concerns. Won't go there cause I would sound pretty bitter, and truthfully I probably am bitter.
I may not "want" to know why me or what caused my RA, but I do want to know about the things I put into my body. So when I am told, "We are going to put you on a new medicine." I demand to know what the choices are and I make the decision about what I am going to put into my body. I do the research and I learn what I need to learn.
Why, well Why not???
I guess what I am really trying to say is that we all have our own way of dealing with out disease, and the process it takes in our bodies. I see so many people who have decided that there way is the BEST, or ONLY way that this disease SHOULD be dealt with. That is so wrong... What works for one of us may or may not work for another one of us. We are all dealing with the same but very different disease. Why should we push things onto others?
Ultimately I don't know much about, RA, but who does. Why does it matter what caused it? Why does it matter, Why Me?
I don't think it does matter but that is just me. I don't like hearing how people think I am wrong because I am putting horrible, terrible, poisons into my body. You know what? My disease may not be in remission, my disease may never be in remission, but at the moment I can walk without my cane (walking stick). I can cuddle my kids without too much pain. I can live a life that I want. I can do that because of the medications I put into my body, and for me the side effects were in no way worse than the disease itself. I understand that for some people they are. When I was on Enbrel I was hit with the worse migraines I could ever imagine. A few weeks in I was ready to call my Rheumy and say I just can't take the side effects of this drug. Not everyone gets that with Enbrel but I did. Not everyone has hallucinations with Methotrexate but I do. So am I wrong to take it. Well shouldn't I be the only one to make that decision?
Why can't we just live by the old adage live and let live. I promise I won't "discuss" your decisions about your health, if you won't disparage mine. I am doing what is best for my family much like you are.
I have been thinking this week a lot about what I know about RA. Honestly it probably isn't a lot, and again honestly it doesn't bother me that much. I "know" a lot of people who are on a mission to figure out what causes RA or answer the question why me? To be honest I just don't care anymore. In the end it doesn't really matter what caused my RA or why I got it. What does matter is how I decide to live with and treat my disease.
Things I do know about MY RA, cause lets face it, it is different for all of us.
1.) No one else in my family that I know of has or had RA.
2.) I was very young, "too young" to have RA and no one believed that there was anything wrong with me including my family. In fact my father would get so mad at me for not being able to do things that he would say "your just allergic to work" Of course this is because he wanted me to take golf carts and cars apart on my own with very little to no help. I haven't been able to kneel since I was in my early 20's and getting up and down was quite hard. Not to mention that when my RA came on I lost the strength in my hands very quickly.
3.) I have very hard to control RA. I have been on several medications and only 1, yes 1, has totally controlled my RA and halted the progression of it. That medication I proved allergic to and was only allowed 2 months of freedom from my RA.
4.) I have found no foods that have any affect, either positive or negative on my RA.
5.) This one annoys me, I did not, have not, seem to not be able to take weight off despite my RA.
6.) I have learned over the years when I am going to "Flare". Sometimes I can even tell ahead of time if it is going to be a "BIG" flare or a "little" flare.
7.) Like most people I can't seem to pace myself when I am having a few good days.
8.) None of the above matters, because things change so quickly.
In my early 20's I had six months where I was pretty much bed bound. I don't remember much from those months except the pain. I remember one days taking a bath and passing out from the pain. I dealt with that alone because my health and my pain were mine alone. No one else cared that was a part of my life at the time. In fact until I turned 27 and met my husband I carried the weight of my problems on my own. Yes I had family but they had other concerns. Won't go there cause I would sound pretty bitter, and truthfully I probably am bitter.
I may not "want" to know why me or what caused my RA, but I do want to know about the things I put into my body. So when I am told, "We are going to put you on a new medicine." I demand to know what the choices are and I make the decision about what I am going to put into my body. I do the research and I learn what I need to learn.
Why, well Why not???
I guess what I am really trying to say is that we all have our own way of dealing with out disease, and the process it takes in our bodies. I see so many people who have decided that there way is the BEST, or ONLY way that this disease SHOULD be dealt with. That is so wrong... What works for one of us may or may not work for another one of us. We are all dealing with the same but very different disease. Why should we push things onto others?
Ultimately I don't know much about, RA, but who does. Why does it matter what caused it? Why does it matter, Why Me?
I don't think it does matter but that is just me. I don't like hearing how people think I am wrong because I am putting horrible, terrible, poisons into my body. You know what? My disease may not be in remission, my disease may never be in remission, but at the moment I can walk without my cane (walking stick). I can cuddle my kids without too much pain. I can live a life that I want. I can do that because of the medications I put into my body, and for me the side effects were in no way worse than the disease itself. I understand that for some people they are. When I was on Enbrel I was hit with the worse migraines I could ever imagine. A few weeks in I was ready to call my Rheumy and say I just can't take the side effects of this drug. Not everyone gets that with Enbrel but I did. Not everyone has hallucinations with Methotrexate but I do. So am I wrong to take it. Well shouldn't I be the only one to make that decision?
Monday, 19 September 2011
Hard Decisions.
For those of you who know me, you know my 7 year old may or may not have JRA. We have had testing done, which was inconclusive. We are supposed to take her back to the Paediatrician in October of this year to do a follow up. Morning are bad for her. Bad as in she is going to make life as miserable as possible for everyone who happens to be in the house at the time that she is not feeling well.
This morning she woke up and promptly told me that she didn't feel like going to school. She complained that everything hurt. Now on days like this it is hard to know if she is "faking" or if she is indeed having a bad day. I keep tend to think that maybe after getting her to move around for a while she will start doing better and not hurting as much. Like those of us with RA mornings are usually hard to say the least. I know those first few steps I take hurt like the dickens.
So this morning I made her push through. She was quite the unhappy little cherub about it all. Grumbled at whined and complained the whole time. Now by the time I got her to school she was fine. For me it is hard to make the decision do I make her push through or do I give in. Most times with having no energy of me own, I want to let her give in. In the long run though I know that, that is not the thing to do. In a lot of ways though it is quite hard for me to make her push through knowing she is hurting. When we got to school I asked her if I needed to tell her teacher that she was hurting. Today they are doing a sports carnival of sorts, well sports and cultural expo, to be exact. So today I made the right decision, right? She has been having some swelling lately as well so the momma in me just wants to curl up on the couch with her and rest for the day.
Being a parent is hard for everyone. I mean it's not like those adorable, wonderful smelling, angelic little people come with instruction manuals. Believe me sometimes I wish they did. Parenting when you have a chronic illness can be so difficult. I have to admit that there have been days that I let the kids get away with staying home simply cause I had a hard time mustering the energy to get them up, dressed, ready, with lunches, recess', and everything that goes into just getting them out the door. Some days just getting them out of bed seems an insurmountable task. Well I guess I should say getting me out of bed since nine out of ten times they beat me in the waking up department.
One thing I am trying to learn is to NOT beat myself up about the good, the bad, or the ugly. These children were gifted to me, for whatever reason I was blessed to have them. I am grateful daily that they are mine. I would be lost in this world without my husband and children, they make this difficult journey well worth the incredible effort. My chronic illness affects how I parent. I would be the worst kind of fool if I were to try and convince myself it didn't. The norm in my house is mommy is sick. Mommy has arthritis and therefore isn't able to plan things in advance. In fact if she does make planes murphy's law strikes up and I usually end up flaring quite badly. Although mommy has learned of late that if I take the few days before plans and rest as much as possible I tend to be able to get through the event. It may end up meaning I take more pain killers for a few days afterwards but we usually manage.
Our normal is you have to be gentle with mommy. This one is hard for my almost 5 year old little boy, you know have boys can be. Out normal is mommy is gonna be loopy sometimes, and we always know when she takes pain killers cause she can't shut up. My kids know that sometimes people are sick and there is nothing that can be done. That sometimes those people just have to live with being sick and adapt. My children are indeed adaptable. There are times they get sick of my disease, but for the most part they are great.
This morning she woke up and promptly told me that she didn't feel like going to school. She complained that everything hurt. Now on days like this it is hard to know if she is "faking" or if she is indeed having a bad day. I keep tend to think that maybe after getting her to move around for a while she will start doing better and not hurting as much. Like those of us with RA mornings are usually hard to say the least. I know those first few steps I take hurt like the dickens.
So this morning I made her push through. She was quite the unhappy little cherub about it all. Grumbled at whined and complained the whole time. Now by the time I got her to school she was fine. For me it is hard to make the decision do I make her push through or do I give in. Most times with having no energy of me own, I want to let her give in. In the long run though I know that, that is not the thing to do. In a lot of ways though it is quite hard for me to make her push through knowing she is hurting. When we got to school I asked her if I needed to tell her teacher that she was hurting. Today they are doing a sports carnival of sorts, well sports and cultural expo, to be exact. So today I made the right decision, right? She has been having some swelling lately as well so the momma in me just wants to curl up on the couch with her and rest for the day.
Being a parent is hard for everyone. I mean it's not like those adorable, wonderful smelling, angelic little people come with instruction manuals. Believe me sometimes I wish they did. Parenting when you have a chronic illness can be so difficult. I have to admit that there have been days that I let the kids get away with staying home simply cause I had a hard time mustering the energy to get them up, dressed, ready, with lunches, recess', and everything that goes into just getting them out the door. Some days just getting them out of bed seems an insurmountable task. Well I guess I should say getting me out of bed since nine out of ten times they beat me in the waking up department.
One thing I am trying to learn is to NOT beat myself up about the good, the bad, or the ugly. These children were gifted to me, for whatever reason I was blessed to have them. I am grateful daily that they are mine. I would be lost in this world without my husband and children, they make this difficult journey well worth the incredible effort. My chronic illness affects how I parent. I would be the worst kind of fool if I were to try and convince myself it didn't. The norm in my house is mommy is sick. Mommy has arthritis and therefore isn't able to plan things in advance. In fact if she does make planes murphy's law strikes up and I usually end up flaring quite badly. Although mommy has learned of late that if I take the few days before plans and rest as much as possible I tend to be able to get through the event. It may end up meaning I take more pain killers for a few days afterwards but we usually manage.
Our normal is you have to be gentle with mommy. This one is hard for my almost 5 year old little boy, you know have boys can be. Out normal is mommy is gonna be loopy sometimes, and we always know when she takes pain killers cause she can't shut up. My kids know that sometimes people are sick and there is nothing that can be done. That sometimes those people just have to live with being sick and adapt. My children are indeed adaptable. There are times they get sick of my disease, but for the most part they are great.
Thursday, 15 September 2011
My RA Body
I have never been a small woman, have always had some extra meat on my bones so to speak. Since going on biological therapy for my RA though I have gained weight. Within a month of starting Enbrel I put on 5 kilos, then another 5 the next month. Now the really odd thing about that was I was more active and eating less. Well I was more active when I was not having a Migraine for three days that usually kept me from being able to eat anything at all.
A few years ago I was on Prednisone, but didn't have a huge amount of weight gain, in fact lost a bit of weight but I was post pregnancy and breast feeding. I then fluctuated for a while on it and was never able to loose more than the 5 kilos. So when I started the biologicals I was really upset that I put the extra kilos on. I could not for the life of me figure out why the heck I would be gaining. Oh well ultimately that doesn't actually matter. So long story short I have struggled with my weight for my entire life. When I moved to Australia I was 76 Kilo's and despite my MIL telling me I still needed to loose weight I felt pretty good about myself. Especially when I was able to fit into some size 14 pants for the first time in years. Now I was very disheartened when my MIL blurted out that I just needed to loose some weight and my RA would get magically better. It hurt even more considering I have lost 80 pounds from the first time she met me, and she never said a damn word about it. I had worked hard, 3 jobs at once, plus taking care of her grandchild and son and she couldn't even say you have done a good job getting all those baby pounds plus a few off. But I digress. When I was at 76 Kilos I felt good, but my RA wasn't any better than it had been when I was 20 - 30 Kilo's heavier. In fact in some ways the pain was worse.
Today I made a decision, I was to be 75 Kilos by the time I am 40. I turned 37 this year, so I am giving myself almost 3 years to get the weight off, and as embarrassing as I find it I will tell you I have to loose about 50 Kilo's I think. I hate that I have had weight problems my whole life, but there isn't anything I can do about that. I am going to give myself what seem like a reasonable goal and try to move forward with it.
The thing is I know in my heart that if I don't get all those Kilo's off I will still be okay. Truth be told it just means that it could take a bit longer. I want to be a healthier fitter mom and spouse and the only way I can do that is jump in and try, right? I may be stuck with an RA body that has disfigured hands and lumps and bumps places. Being on pred for a while, may have made my tummy a shape that I don't so much like, but I can be happy with me. I want to undertake the time and changes that I need to do to be happy with me. My kids love my and my hubby loves me, that makes all the difference in the world, now I just need to make sure I am around for as long as possible, and that means taking better care of me.
Sorry I know I rambled...
A few years ago I was on Prednisone, but didn't have a huge amount of weight gain, in fact lost a bit of weight but I was post pregnancy and breast feeding. I then fluctuated for a while on it and was never able to loose more than the 5 kilos. So when I started the biologicals I was really upset that I put the extra kilos on. I could not for the life of me figure out why the heck I would be gaining. Oh well ultimately that doesn't actually matter. So long story short I have struggled with my weight for my entire life. When I moved to Australia I was 76 Kilo's and despite my MIL telling me I still needed to loose weight I felt pretty good about myself. Especially when I was able to fit into some size 14 pants for the first time in years. Now I was very disheartened when my MIL blurted out that I just needed to loose some weight and my RA would get magically better. It hurt even more considering I have lost 80 pounds from the first time she met me, and she never said a damn word about it. I had worked hard, 3 jobs at once, plus taking care of her grandchild and son and she couldn't even say you have done a good job getting all those baby pounds plus a few off. But I digress. When I was at 76 Kilos I felt good, but my RA wasn't any better than it had been when I was 20 - 30 Kilo's heavier. In fact in some ways the pain was worse.
Today I made a decision, I was to be 75 Kilos by the time I am 40. I turned 37 this year, so I am giving myself almost 3 years to get the weight off, and as embarrassing as I find it I will tell you I have to loose about 50 Kilo's I think. I hate that I have had weight problems my whole life, but there isn't anything I can do about that. I am going to give myself what seem like a reasonable goal and try to move forward with it.
The thing is I know in my heart that if I don't get all those Kilo's off I will still be okay. Truth be told it just means that it could take a bit longer. I want to be a healthier fitter mom and spouse and the only way I can do that is jump in and try, right? I may be stuck with an RA body that has disfigured hands and lumps and bumps places. Being on pred for a while, may have made my tummy a shape that I don't so much like, but I can be happy with me. I want to undertake the time and changes that I need to do to be happy with me. My kids love my and my hubby loves me, that makes all the difference in the world, now I just need to make sure I am around for as long as possible, and that means taking better care of me.
Sorry I know I rambled...
Monday, 12 September 2011
There has to be a better way
Yesterday was infusion day for me. I don't so much like infusion days. I left for my hour plus drive to get to the hospital feeling pretty good. That was not to last long I tell ya.
SO I get there and for a change they are seriously busy, but moving faster than they ever have. Confused me to no end. Oh well I am sitting in my chair waiting for the nurse. I started reading and relaxed a bit. Well the nurse came over to get my cannula in. It took 4 tries this time. I am so sick of having to be poked numerous times. First on was a lovely nurse who got a flash, then nothing. I was happy for her to take it out cause it hurt anyway. The second person to try was the doctor in charge on the infusion room. He went straight through my vein <sigh>. The third was the "Expert" at least that is what they said. She went into the hand and nope not a drop came out, no flash. Then the best lady in the infusion room agreed to do it. I told her I wish she could just do it every time. She told me to just asked for her or another one of the women. She was like, look just tell them you don't wanna insult or be rude but you would just prefer one of the two of us. She was like, there is no reason for you to be poked 4 times if we can get it in the first time. So they were in, not in a vein they like using for infusions but in none the less. Of course after the 4 needles I was feeling pretty crappy.
Got the infusion over with and had my vitals checked. Well my blood pressure had shot through the roof during the whole event.
There just has to be a better way to do this. I have NO IDEA what it is but I am over the poking and prodding especially when I tell them where to go and they won't. I think I know my arms and veins better than them. I get that they don't want to use the inside of the wrist or the inside of the elbow, but if they can get it in, in one go isn't that better than me looking like a pin cushion when I get home. My son asked me last night why I had so many bandaids on. So I had to give him an explanation. Just told him that it took them a while to get mommies medicine into her. Luckily I don't seem to be as bruised as I was last time. I had a bruise that didn't go away for a month after that one.
Today I am tired and in pain. At 8 am I had to roll over and take some pain killers before I could even think about getting out of bed. I am fuzzy headed and feel like crap.
So below I have added some pics of one of my last "good" infusions. I took them to post on my RA learning and support site.
Like I said, THERE HAS TO BE A BETTER WAY.
SO I get there and for a change they are seriously busy, but moving faster than they ever have. Confused me to no end. Oh well I am sitting in my chair waiting for the nurse. I started reading and relaxed a bit. Well the nurse came over to get my cannula in. It took 4 tries this time. I am so sick of having to be poked numerous times. First on was a lovely nurse who got a flash, then nothing. I was happy for her to take it out cause it hurt anyway. The second person to try was the doctor in charge on the infusion room. He went straight through my vein <sigh>. The third was the "Expert" at least that is what they said. She went into the hand and nope not a drop came out, no flash. Then the best lady in the infusion room agreed to do it. I told her I wish she could just do it every time. She told me to just asked for her or another one of the women. She was like, look just tell them you don't wanna insult or be rude but you would just prefer one of the two of us. She was like, there is no reason for you to be poked 4 times if we can get it in the first time. So they were in, not in a vein they like using for infusions but in none the less. Of course after the 4 needles I was feeling pretty crappy.
Got the infusion over with and had my vitals checked. Well my blood pressure had shot through the roof during the whole event.
There just has to be a better way to do this. I have NO IDEA what it is but I am over the poking and prodding especially when I tell them where to go and they won't. I think I know my arms and veins better than them. I get that they don't want to use the inside of the wrist or the inside of the elbow, but if they can get it in, in one go isn't that better than me looking like a pin cushion when I get home. My son asked me last night why I had so many bandaids on. So I had to give him an explanation. Just told him that it took them a while to get mommies medicine into her. Luckily I don't seem to be as bruised as I was last time. I had a bruise that didn't go away for a month after that one.
Today I am tired and in pain. At 8 am I had to roll over and take some pain killers before I could even think about getting out of bed. I am fuzzy headed and feel like crap.
So below I have added some pics of one of my last "good" infusions. I took them to post on my RA learning and support site.
Thursday, 8 September 2011
May the ones we have lost to the terrible effects of RA Rest in Peace, and may they know no more pain.
May the families left behind remember the good over the bad, and may the walk forward in peace. Knowing that the ones lost will be forever at peace.
Remember we choose to live or die with everything life throws at us. Some of us have more to deal with, but in the end we are all just trying to navigate through life with as little pain and suffering as possible. For some of us we get a double dose of the pain, and those of us who do...
We know they joy of life and the sorrow of lose.
We know how bad the pain can be.
We know the sting of rejection, and for some the real meaning of true acceptance.
We struggle daily, for some of us to WANT to live.
In the end we cherish the people around us who accept and love us despite our limitations. We give the ones we love so much more than our love, we give them each and everyone a bit of our soul. If you are truly blessed to know a person who is chronically ill and in pain daily, then remember to tell them you appreciate the effort it took them to just wake up on any given day. For some of us we need to hear that. We need to know that our efforts to live are appreciated and recognised.
Above all remember that EVERYONE has a struggle to overcome...
Sometimes just a kind word could make a difference.
I wrote this a couple of months back when I had heard that 2 women, RA Chicks had taken there own lives. At the same time I had heard that another RA Chick a blogger whose blog I just adored had passed away. Her death was not a result of her RA, still it made me start thinking.
Wednesday, 7 September 2011
The joys of children!
My oldest is 8, will be 9 in January and is in Year 2 (second grade).
My middle child is 7, in fact turned 7 last week, she is in Year 1 (first grade).
Then there is my boy, who is the baby, who is 4, almost 5. He will start school in Jan/Feb of next year.
My middle child is the one who totally pushed me beyond the limits of my patience and sanity this morning. Now I have to say that she is the one who shows early signs of possibly having JRA (juvenile rheumatoid arthritis). When we really started worrying about it, I decided I had to tackle my disease in a whole new way. I could no longer sit or lay around feeling sorry for myself. If she does indeed develop or have JRA I need to be the one to show her it is not the end of the world. I need to show her it is still possible to accomplish our dreams and have a life. With that said, mornings are not a good time for her. It takes her a good thirty minutes to get moving in the morning and then some mornings she is more than just a little difficult, like this morning.
She was all happy while sitting on the couch watching TV with her brother and sister. Then I asked her to get ready for school and immediately the excuses started. Now yesterday morning she woke up with quite a bit of swelling in her back under her right shoulder blade. This is a spot on me that can get some pretty horrendous flares. I get to the point where I can't breathe because of the immense pain associated with it. Sleeping is next to impossible and it takes a good 3 days of constant pain medications to get the pain back under control. Now I never now what is going to cause this so I have no way of knowing when to expect it. So yesterday I though, well she might not have a great day. I gave her Nurofen (Ibuprofen) and sent her to school. She seemed fine, was really grumpy and whiney when she got home. So silly me I was not expecting a difficult time this morning. Don't ask me why, I guess I was living in a fantasy world. At times my darling middle child can fixate on things. She did this, this morning.
What did she fixate on you ask? Well oddly enough something she has known for some time. This morning one of her shoes, yes just one, was too big for her. <SIGH> Yes I did sigh on her. I have explained to her before that she wears those same exact shoes every single school day. I tried this tact this morning. It just lead to more and louder crying and screaming. So I said, Rhaine you know one of your feet is bigger than the other, those are the same shoes you always wear. Around the 15 minute mark she decided to demonstrate the fact that one shoe was WAY TOO big for her by kicking it off and across the kitchen. Still I am keeping my cool. After a good 20+ minutes of this she finally put her shoes on. I had gotten her lunch ready all she had to do was put it in her lunchbox. After she did that she sat on the floor growling at her own shoe trying to make it even tighter than it already was. SO finally we are done with the shoe drama, we move onto breakfast. She wanted peanut butter toast. I made it for her and she carries it to the table and scream bloody murder yet again. This time it is cause her brother and sister had Strawberry Milk. I told her they asked for it, you have not asked for Chocolate Milk, do you want chocolate milk? She did and I made it for her. She then goes to the table to start eating her toast. She ended up dripping peanut butter all over her shirt and started screaming. I again not quite so calmly told her to just go change her shirt. She did and now we start getting her hair ready. I should tell you today is school picture day. We are not actually buying pictures but she still has to look okay for the class photo. Well she got upset YET AGAIN cause both girls have lost all the blue ponytail holders and she has to have blue today. I tried to explain that no one was going to see the white scrunchee cause it was going to be at the back of her head. She freaks out on me cause while I am brushing her hair and moving her head ALL over the place she is worried that the ponytail will end up on the side of her head. The side of her head is TOTALLY unacceptable as far as she is concerned. I get the pony tail in and she screams it hurts. I took it out, at this stage I am really at the end of my string. So she tells me she wants to do her own hair. I refuse, so she cries and whines the whole time, but I get that dadgum ponytail in. She puts her hands on her head and screams at me, cause she decided it is not in the middle. At this point my patience is at it's end. I tell her it was in the middle and to get over it. So while she is crying I have to get her school jumper on her, not an easy task. Now I have no idea why, but the crying continues. I look at her and told her I was done with her. Yes I am a horrible mother, I further said I can't take anymore of this, this morning we are going to school. She cries all the way to the car, I slammed the front door, she cries as she is getting into the car, I slammed that door to. SO what do you think happens as I get myself into the car, she quits the freaking crying, completely and totally. She we get to school and she is once again my loving, caring, cuddly little baby girl. Apparently she was over being upset with me cause she held my hand all the way to her class, then had me walk her down the steps to the play area. At this stage I see she got peanut butter on her skirt. She told me it was no big deal to go ahead and go. I had to take her to the bathroom to clean it up. There is a boy in her class who is allergic to peanuts, God I hope I got it all out. I also told her she could not have peanut butter toast for breakfast on school mornings anymore. God help me on the day she forgets that one...
Medicine woes
Just to introduce myself. I am Jackie and I have had Rheumatoid Arthritis since I was at least 19. It took me several years to be diagnosed. I say since at least 19 because looking back it is very possible that I have had it since I was very young. In the last 3 years I have been on several biological medicines and am currently on Orencia Infusions once a month.
I also take several pills including
Sulfasalazine - Azulfidine -Twice Daily - Disease-modifying antirheumatic drug
Arava - Leflunomide - Once Daily - Disease-modifying antirheumatic drug
Plaquenil - Hydroxychloroquine Sulfate - Daily - Disease-modifying antirheumatic drug
Methotrexate - evil drug- Once Weekly - Disease-modifying antirheumatic drug
Endep - Amitriptyline - Once Daily - anti-depressant - pain management
Noten - Atenonol - Once Daily - blood pressure
Orudis - Ketoprofen - Anti-inflammatory
There are both supplements and pain killers that I won't get into today.
Since we moved in May and I thought that I would make my life a bit easier by arranging to have my infusions at the new house. I was told this would be no big deal that I could not only have them moved but have them at home. Well apparently this is not an entirely easy transition to make. Not like I was lead to believe it would be anyway. The ONLY company in Australia to distribute Orencia requires a completely seperate application from the Pharmacy for this particular drug. So even if I can find a pharmacy that has an account, they will have to have an Orencia Specific Account in order to supply my infusion drugs. Confused yet, well I sure as heck am, and so is the Chemist that was trying to get me my drugs today. On top of that problem the infusion nurse has yet to get in touch with me anyway. Meanwhile I apparently can't just go ahead and take my last appointment at the hospital that was giving me my infusions cause it is such late notice, I am supposed to have the infusion on Monday.
I have called my Rheumy's nurse and asked her what I could do. Her response, "Well I don't know, maybe you could call the hospital." I am thinking why are you employed since your ONLY job is to handle injections and infusions if you can't actually do that job. I swear this woman keeps screwing up on me. When I first started the infusions she sent the script to me instead of to the hospital. Then I had to go out of my way to drive the prescription to the office so they could then mail it to the hospital. Now I do realise that, that does not seem like a lot of stuff to have to do. But just getting out of the house and into the car is all I can accomplish some days. At the time I was off all biological drug therapy and the pills just don't work for me. That short trip was all I could do for that particular day.
So at the end of the day, it looks like my infusion is going to have to be late, and I am exhausted, hurting, and wanna cry. I don't like crying, especially when I am alone with the kids, but tonight I am being mommy dearest and I hate when I get that way. Oh and lets not forget that last night during a storm I went out to get something out of the car. While going out I tripped and ended up on my knees and forearms with a twisted ankle. Luckily it was only twisted, but the more I have been on it today the more it hurts. I am afraid to look if it has been swelling or not. I wanna go to bed, but will stay up a bit longer so I can actually see my darling husband.
I also take several pills including
Sulfasalazine - Azulfidine -Twice Daily - Disease-modifying antirheumatic drug
Arava - Leflunomide - Once Daily - Disease-modifying antirheumatic drug
Plaquenil - Hydroxychloroquine Sulfate - Daily - Disease-modifying antirheumatic drug
Methotrexate - evil drug- Once Weekly - Disease-modifying antirheumatic drug
Endep - Amitriptyline - Once Daily - anti-depressant - pain management
Noten - Atenonol - Once Daily - blood pressure
Orudis - Ketoprofen - Anti-inflammatory
There are both supplements and pain killers that I won't get into today.
Since we moved in May and I thought that I would make my life a bit easier by arranging to have my infusions at the new house. I was told this would be no big deal that I could not only have them moved but have them at home. Well apparently this is not an entirely easy transition to make. Not like I was lead to believe it would be anyway. The ONLY company in Australia to distribute Orencia requires a completely seperate application from the Pharmacy for this particular drug. So even if I can find a pharmacy that has an account, they will have to have an Orencia Specific Account in order to supply my infusion drugs. Confused yet, well I sure as heck am, and so is the Chemist that was trying to get me my drugs today. On top of that problem the infusion nurse has yet to get in touch with me anyway. Meanwhile I apparently can't just go ahead and take my last appointment at the hospital that was giving me my infusions cause it is such late notice, I am supposed to have the infusion on Monday.
I have called my Rheumy's nurse and asked her what I could do. Her response, "Well I don't know, maybe you could call the hospital." I am thinking why are you employed since your ONLY job is to handle injections and infusions if you can't actually do that job. I swear this woman keeps screwing up on me. When I first started the infusions she sent the script to me instead of to the hospital. Then I had to go out of my way to drive the prescription to the office so they could then mail it to the hospital. Now I do realise that, that does not seem like a lot of stuff to have to do. But just getting out of the house and into the car is all I can accomplish some days. At the time I was off all biological drug therapy and the pills just don't work for me. That short trip was all I could do for that particular day.
So at the end of the day, it looks like my infusion is going to have to be late, and I am exhausted, hurting, and wanna cry. I don't like crying, especially when I am alone with the kids, but tonight I am being mommy dearest and I hate when I get that way. Oh and lets not forget that last night during a storm I went out to get something out of the car. While going out I tripped and ended up on my knees and forearms with a twisted ankle. Luckily it was only twisted, but the more I have been on it today the more it hurts. I am afraid to look if it has been swelling or not. I wanna go to bed, but will stay up a bit longer so I can actually see my darling husband.
Subscribe to:
Posts (Atom)